October 1, 2008
Opening the Gates
Questions for Jacob? Ask in the Jacob Arston topic in the Reader Forums
Hi. My name is Jacob Artson and I am a person just like you.
I am part of a wonderful Jewish family, I go to our local public high school, where I am in mostly regular classes, I play sports, I love to travel, and I enjoy hanging out with my friends and girlfriend.
The only difference between you and me is that I have lots of labels attached to me, like nonverbal, severely autistic and developmentally disabled.
It is true that I have some challenges, but there are lots of myths and misconceptions about autism out there. Many purported experts claim that individuals with autism are not interested in socializing. This is totally ridiculous. I love people, but my movement disorder constantly interferes with my efforts to interact. I cannot start and stop and switch my thinking or emotions or actions at the right time. This can make being in a big group very lonely and that is the worst thing about autism. So next time you see someone like me at your synagogue or at your event, remember that they probably feel really lonely and you could be the person to make their day by smiling at them and letting them know that they exist.
Another myth is that the majority of kids with autism are mentally retarded. In fact, our bodies are totally disorganized but our cognitive skills are intact and our minds are hungry for knowledge.
Every person alive is encumbered by challenges and blessed with gifts. I used to think that my ratio of challenges to gifts was higher than most, but now I realize that my challenges are just more obvious. I have learned that there are actually many positive aspects of autism. For example, I get a VIP pass at Disneyland and I get to kiss all the beautiful counselors at camp and pretend I don't know any better. On a serious note, not being able to speak means that you spend lots of time listening.
In fact, much of what I know I've learned from listening to conversations that other people didn't think I could hear, or listening through the wall to what the teacher in the next classroom was saying. People often ask me how I became such a good writer. The answer is that my inability to speak gives me lots of time to contemplate and imagine and also forces me to hear everyone's perspective and think about it because I cannot interrupt or monopolize the conversation like people who have oral speech.
In the autism world we say that not being able to speak doesn't mean that you don't have anything to say. In my experience, the converse is also true —just because you can speak doesn't mean that you have anything worth saying.
Since this is a conference on including people with disabilities in the Jewish community, I want to share with you the ways in which autism has affected my participation in Jewish life. I have found great support in God, Torah, and the Jewish community. The greatest single day of my life was my bar mitzvah because everyone there accepted and celebrated me for exactly who I am. At the end of the service, everyone came up on the bima for Adon Olam. I will carry in my mind and heart forever the picture of everyone there smiling at me. I had wonderful experiences when I was in a Jewish preschool and later kindergarten, even though my teachers had never had a child with autism in their class. What made those experiences successful was the way the teachers modeled inclusion for the other kids. They treated me as a person made in God's image and not as different in any way. In kindergarten, I had amazing peers. They were mostly Persian and inclusiveness is engrained in their culture. They tried all year to get me to interact with them even though I was usually too excited to focus. I've also had wonderful buddies from The Friendship Circle, attended several Jewish camps, participated in a Jewish musical theater program called The Miracle Project, and prayed at Koleinu, a service at Temple Beth Am for kids with special needs.
But there have been obstacles as well. I have never attended religious school because I was bored in the special ed Hebrew school and the typical classes did not allow a place for me to engage either. When I was younger, I went to synagogue every Shabbat but the other kids ignored me. As a teenager, I have had some wonderful Jewish experiences at camp and elsewhere, but the first reaction is that I am too disabled to attend, or that I don't participate once I'm there. So whether I'm invited seems to depend on the particular director that year. I have noticed that when I attend Jewish youth group events, the volunteers seem to pay attention primarily to the verbal kids, so I am lonely. I suspect that this stems from lack of exposure, but their youth leaders could do a better job of modeling inclusion too.
The public schools and secular programs I have attended have been much more welcoming. The public schools are overwhelmingly black and Hispanic, and they, too, seem to have a culture of inclusion. The kids at school treat me like family and pull me into everything they do. I go to a secular camp for autistic kids in Aspen every summer and everyone is welcome there. We do cool things like go tubing and white water rafting and I am able to participate in everything because I know they will work with me where I'm at.
In my secular inclusive sports program, Team Prime Time, the director has taken the time to allow for sharing on several levels, so the kids all respect me for my intelligence and understand how hard I'm working to make a basket or kick the ball. I have also been part of their new volunteer training and have spoken about autism at school, but I have never been invited to participate in volunteer training for any Jewish program I have attended.
So here is a final thought I would like to leave you with:
The best peers and aides I have had didn't have any special background. It doesn't actually take any training to be a leader who models inclusion. It just takes an attitude that all people are made in God's image and it is our job to find the part of God hidden in each person.
I used to get very upset and offended at the idea of being someone's mitzvah project or community service project. But now I see that I also have a role to play in helping create the messianic future. It is easy in our affluent society to become too dazzled by the material opportunities and the privileges that we have been born with. But I have had to struggle from the day I was born to do many things that other people take for granted. Because of that, I have experienced God's love in a way most children have not. So maybe we are each other's mitzvah project because I can help them see the glories of the world that they have never noticed, and they can teach me how to look like other kids. All in all, who is getting a greater benefit? In the end, together we bring God's glory to all of humanity.