Living With Autism-Encumbered and Blessed

The spring issue of CJ:  Voices of Conservative Judaism contains a number of wonderful articles, but one in particular touched me deeply.  I have a blind son and a son with a diagnosis on the autistic spectrum.  I have four children, each uniquely blessed with talents and strengths and fears and weaknesses.  Nevertheless, when I meet people with disabilities outside of my family, I ask myself the same questions over and over again:

How well do I see beyond the quirky jerky movements, beyond the wheels on the chair, beyond the blind eyes or augmented ears or impaired speech?  Do I fall into the trap of seeing people with disabilities as superhuman just because they live with disabilities?  Am I seeing impaired humanity rather than embodying the love and wisdom of believing that the face of God is visible within every human being, learning how to look beneath the physical shell of the individual and find the sparks of unique holiness?

Jacob Artson is a powerful communicator, a talented writer.  Jacob Artson has autism.  We should not be surprised that these two sentences are mutually inclusive, not exclusive.

http://www.uscj.org/Encumbered_and_Bless8286.html

Encumbered and Blessed

by Jacob Artson

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 regular English and social studies classes, I play sports, I love to travel, I enjoy hanging out with my friends, and I care about making this world a better place. 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 many challenges, but there are lots of myths and misconceptions about autism out there. Many purported experts claim that people 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 you know they exist.

Another myth is that the majority of people 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 people’s, but now I realize that my challenges are just more obvious. I have learned that autism can have its advantages. 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 it 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 I have been asked to write about 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. My family has been my greatest support from the day I was diagnosed. My amazing twin sister Shira is my best friend, hero, chief source of entertainment, and fashion consultant. My ema (mother) is my rock and has never let autism be an excuse for failure. My abba (father) has been my spiritual guide and is also really fun to be with. Even though I know they love me, they have carried a tremendous burden and I always feel guilty about that. Unfortunately, the Jewish community has not always helped ease their burden or mine and often has exacerbated it.

I have found great support in God and Torah. Our people’s wisdom has helped me through difficult times and guided me as I strive to become a productive member of society. My bar mitzvah was special because everyone there accepted and celebrated me for exactly who I am. I wrote a siddur commentary and everyone in attendance took turns leading the prayers and reading my words. At the end of the service, everyone came up on the bimah 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 in 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. Believe it or not, there is a hierarchy even within programs for kids with special needs. Because many Jewish programs in my community are geared for so-called “higher functioning” children, the first reaction is often that I am too disabled to attend. So whether I’m invited seems to depend on the particular director that year or whether my parents decide to complain and fight for me to participate. Most of these programs could easily accommodate people like me with a little attitude adjustment. My family’s efforts to include me in synagogue life have also been a source of great stress. When I was younger I went to synagogue every Shabbat, but the other kids ignored me. My synagogue started a Shabbat morning service for kids with special needs and that gave us a community of sorts, but now I am a teenager and need to find my own place. I was invited to speak at Ikar, a small synagogue in our community, where I was welcomed just like any other member. I was not given icy stares when I got too excited, so my family joined. The kids there say hi to me even when they are not getting community service credit for interacting with me.

The public schools and secular programs I have attended have been much more welcoming and are built on a model of mutual respect rather than pity. The Los Angeles 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 kayaking 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 dazzled by the material opportunities and 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.

Jacob Artson, 17, is a student at Hamilton High School in Los Angeles. He hopes to become a writer and teacher.

http://www.uscj.org/Encumbered_and_Bless8286.html

To Be or Not To Be … A Bridesmaid

Question:  A friend of mine is engaged to a man who is an alcoholic and regular drug user.  She has invited me to be a bridesmaid, but I don’t think getting married to this man is what’s best for her. Prior to her relationship with him, she was opposed to drug use.  Now she is also a more than occasional user, and is also on anti-depressants.  She wants to be a teacher and but I feel like going through with the marriage and continuing on this path would be a great loss. I’ve never been real close with her, but having indirectly expressed my concerns about what was going on she doesn’t call me to talk about what’s going on anymore.  Do you feel it is ethically better to step down from being in the wedding party? Should I decline the wedding invitation entirely?  Should I tell her what I think?  Truthfully, it may not sway her from doing what she’s going to do, and worst case, she could get married and if she’s not happy get divorced. They want to have a child together.

Answer:  My understanding of what it means to stand up for someone’s wedding is that you are supporting the marriage.  If you think it’s an unwise marriage, you should not stand up.  You probably shouldn’t attend either, but if it was a close friend I might say that you should attend in order to preserve the relationship, so you’ll be there to catch her when she falls. The Jewish principle involved is based on the verse, “You shall not … place a stumbling block before the blind” (Leviticus 19.14).  Read broadly, this verse teaches that one should not place moral or ethical or behavioral stumbling blocks before those unable to recognize them.  Don’t give a drink to an alcoholic.  Don’t forward alarming email unless you have verified that it is true (and ‘I got this from the close friend of the cousin of someone I trust’ doesn’t count).  Don’t tell a person that a certain food is kosher when it is not. Don’t tell a person that a certain way to avoid paying taxes is legal if it is not.  Don’t help a person enter a marriage if you believe (and have evidence to support the belief) that they marriage will be seriously detrimental to her physical and/or emotional health. The question of how explicitly you should talk to your friend about the reasons why you will not stand up and why you are not attending the wedding (if you are not going) is a bit more complicated. The Jewish principle is “Reprove your neighbor so that you will not incur guilt on his account” (Leviticus 19.17).  Basically, the instruction is that you have an obligation to tell your friend if she is doing something wrong.  If you see something happening that is wrong and you keep silent, you are complicit.  It’s like the old slogan about fighting AIDS in the mid 1980’s, “silence=death.”  However, the Rabbinic tradition inserted a large caveat —  If the person is not likely to listen to the reproach, and in fact is likely to get mad at you for the advice, then you should keep your mouth shut. In this case, you have already told you friend indirectly that you think the marriage is a bad idea,  I think you should say one more time, in the gentlest possible voice, that you cannot stand up at the wedding because you think the wedding is a bad idea due to the alcoholism and drug use.  I realize that this might cause you to lose a friend, but you say you’ve never been very close anyway.  You say worst case, they get divorced.  Not true.  Worst case, they get divorced and a child has to suffer for the rest of his life with the pain and separation of divorced parents and an alcoholic drug using father and drug using mother.  There may be nothing that you can do to prevent the marriage, but you don’t want the burden of having supported that worst case on your conscience.

This article is one of an occasional series of posts bring Jewish ethics to life using real world dilemmas.  Would you share with me moments when you were at a crossroads and weren’t sure what to do?  Moments when you might not have turned to Jewish sources for an answer, but made a decision and after reflection you are now curious whether Jewish wisdom might have suggested a different answer?  You may post your moments on the blog in response to this post or you may email them to me at Rabbi@AhavasIsraelGR.org.  If you want them to remain private please indicate this, and I will change enough details so that you cannot be identified.  If I am not sure whether I have sufficiently disguised your identity or if you want to see what I’ve written before I publish it, I will email my response to you before publishing anything.

Remember — The purpose of this blog and the mission of the synagogue is to explore what it means to make our lives embody Torah.  How does our eating, our Shabbat practice, our prayer experience, embody Torah?  How do we internalize and embody our Torah study?  How do we embody Torah in our ethical decision making?  Please join me in this exploration — I welcome your comments and suggestions.

Becoming the Face of God – Parshat Yitro and the Second Pronouncement

In this week’s Parasha, Parashat Yitro, we read the Aseret Had’varim, the 10 pronouncements of Mount Sinai.

The second pronouncement begins, “You shall not make for yourself a sculptured image, or any likeness [of what is in the heavens above, or on the earth below, or in the waters under the earth]” (Ex.20:4).

The late 18th century Rabbi Moshe Chaim Efrayim of Sudylkov also known as the Degel Mahaneh Ephraim, reads this verse not as a command against making images of God, but rather as an instruction concerning one’s general religious behavior.  He suggests that the verse means “You shall not make of yourself a sculptured image or a likeness [of God.]”  Don’t make yourself into an image of God?  On one hand, it’s a puzzling reading because we know from the beginning of Genesis that every human being is created in the image and likeness of God.  On the other hand, isn’t it obvious that we shouldn’t have the arrogance to make ourselves into God?

Reb Moshe Chaim’s intent is more suble than either of these readings.  He believes that the face of the shekhina (divine presence) visibly shines through the face of the spiritually elevated individual, the most righteous, meritorious, and wise of any generation.  Those who devote their lives to representing God in the world actually become the face of God, as it were.

It’s true, isn’t it?  Don’t you see God’s love for the poor and downtrodden in the face of Mother Theresa?  God’s love for people of all races and creeds in the face of Martin Luther King, Jr.?  God’s love for a Torah both of Shabbat and of Social Justice in the face of Rabbi Abraham Joshua Heschel?

Most of us, however, have not attained this lofty level and are just the image and likeness of God as are all created human beings.  Reb Moshe Chaim’s reading of the second statement teaches us not to be satisfied merely being the image and likeness of God, but rather to push ourselves to embody the face of the Shekhinah.  Anyone can be the image of God.  Don’t be satisfied merely being the image and likeness of God, he tells us.  Aim higher.  Aim to be the face of God.