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


Filed under: Accessibility and Inclusion, Embodied Torah Tagged: autism, inclusion, non-verbal

Stuck in a Rut? Pesah Tells You to Get Unstuck!

Divre Harav, Words from the Rabbi – Bulletin article, March, 2010

I am grateful to the leadership of Congregation Ahavas Israel for giving me a three month Sabbatical.  The time away from active rabbinic work was renewing and refreshing, but it is very good to be back at the synagogue.

While away, I visited with a number of pastors to learn about the creation of a sermon from a fresh angle.  Within Protestant churches, the sermon is the focus of the service much the same way that the Torah reading is the focal point of a traditional Jewish Shabbat morning service.  We devote about 1/3 of the service time to the Torah reading, and about 1/2 of our time on Shabbat morning is devoted to the Torah service, adding in the Haftarah and the sermon.  In the churches I visited, the pastors devoted an equivalent amount of time within their service to the sermon.  Because their sermon functions as the main vehicle for hearing sacred Scripture, they tend to be longer and more carefully structured than most synagogue sermons.  They also tend to use Biblical verses to appeal to the emotional and moral sense of the congregation, often teaching a specific belief or theological approach to God, while most synagogue sermons tend to appeal to the intellect and teach a specific Jewish practice or behavior.

I don’t believe that one style is inherently better than the other.  What I learned from the project is that it is easy to get into a rut, preaching and teaching in the same style and appealing to the same part of the brain week after week, just because it is familiar and comfortable.  The work I did as a graduate coach in a Dale Carnegie program reinforced the same message — that most of us are stuck in a rut, doing the same things over and over again, repeating the same habits and the same mistakes, because we are afraid of trying something new.

This is a good lesson to be reminded of in conjunction with the celebration of Pesah.  The Hebrew word for Egypt is Mitzrayim, a word that connotes narrow places  (probably taking its name from the fact that the fertile part of Egypt is a narrow strip of land on either side of the Nile).  In a metaphorical sense, when we are stuck in Mitzrayim, we are living our lives in a constricted place. We are stuck inside a narrow box.  Pesah is the time to look at the narrow box in which we are living, look at those behaviors which keep us stuck in a rut, and free ourselves.


Filed under: Divre Harav - Words from the Rabbi Tagged: Divre Harav, Divre Torah, Passover, Pesah, sermon

Tattooing and Body Piercing

I have been teaching my 7th grade class about Jewish ideas of body and soul for the past month.  I entitled the class “Our Body and Our Selves:  Owning vs. Renting.”

One of the most interesting places that this idea plays itself out is in the arena of body art — tattooing and body piercing.

If we own our bodies, we should be able to do with it what we want:  color the skin,and pierce the skin and hang decorations wherever we want.  When we own a house, we are permitted to make whatever renovations we want without any restrictions.

However, if we are only “rentors,” temporary inhabitants of our bodies, it would make sense that the LandLord wouldn’t want us to paint the walls crazy colors.  It would also make sense that we shouldn’t be allowed to put nails in the walls and hang pictures all over the place in haphazard ways.

I’m sure most parents would be happy if it were in fact the case that they could tell their children that the Torah forbids tattooing and piercing.  However, that turns out not to be the case.  The prohibition against tattoos is reasonably explicit (Leviticus 19:28), but equally explicit verses about piercings in the ear and nose (Exodus 21:6, Genesis 24:47, Exodus 32:2) as well as Rabbinic references to women and men with pierced ears make it clear that body piecing is permitted!  Further, there is no compelling argument to permit ear and nose piercing while prohibiting eyebrow, belly button, or other skin piercing.

Rabbi Alan Lucas has written a fascinating teshuvah on the topic, which I will be teaching at an adult education series beginning April 18.  In the meantime, feel free to read Rabbi Lucas’ teshuvah here.


Filed under: Embodied Torah, Theology - The Thought that Drives our Practice

Yet Another Embarrassment in the Israeli entanglement of Religion and State

Jewish tradition treats the body as a sacred vessel for the soul.  After death, the body is treated with the same respect as when it was alive.  It is carefully washed and dressed before burial.  Burial takes place as soon as possible – it is not respectful to leave the body unburied.  Autopsies are not permitted, unless doing so will directly save the life of another identified person.  Mutilating the body for the purposes of profit, experimentation, or education is not permitted.

Yet, it is widely accepted that halakha permits organ donation, even in the Orthodox world.  The Conservative movement believes that signing on organ donor card is a positive mitzvah – an obligation.  You can read a teshuvah on the topic here.

Organ donation, however, generally requires accepting the cessation of brain activity as a criteria for death, rather than heart death.  The reason is simple and obvious.  It is generally considered to be the case that once the heart stops beating long enough to pronounce the patient dead, the organs have been deprived of oxygen long enough no longer to be suitable for transplantation.  I have read some material suggesting that in some cases, a criteria of non-heart beat for a period of less than 5 minutes might be enough to declare death and harvest organs, but this is controversial.

Nevertheless, many Jews believe that organ donation is not permitted – that a body must be buried completely intact in order to be resurrected in the messianic era.  My response to this is if God could create my body from joining together two cells, then God can recreate my body even if it is missing a few organs!

Consequently, the rate of organ donation in Israel is embarrassingly low.  Only 8-10% of Israelis are registered as organ donors, compared with an average of 35% in other Western countries.  The Knesset has passed a law giving those who agree to be a donor a higher priority if ever they should need an organ.  The deputy health minister, however, is a follower of Haridi rabbi Yosef Shalom Elyashiv, who does not believe in a brain death criteria.  His followers are not allowed to donate organs.  They are, however, allowed to accept donated organs (is this the definition of hypocrasy, or what?)!  The deputy health minister is apparently going to refuse to implement the new law because he and the rest of the 100,000 followers of Elyashiv would be bumped to the bottom of the organ queue.  You can read stories about the law below.

http://www.tabletmag.com/scroll/28295/israeli-organ-policy-may-be-d-o-a/

Israeli Organ Policy May Be D.O.A.

Innovative idea could discriminate against sect

BY MARC TRACY | 4:21 pm Mar 15, 2010 |

n an effort to raise its quite low 10 percent organ-donor rate, Israel has been planning to give those who agree to be donors a leg up when it comes to receiving organ donations. They would move up in the queue, in other words, should it ever come to that.

While bioethicists say this is perfectly kosher—“reciprocal altruism” is the apparently not-oxymoronic term—the plan has come under fire for allegedly discriminating against some ultra-Orthodox Jews who believe they are religiously barred from being donors. (Never mind that they’re not, assuming the organs are being used to save a life and not for profit.) Specifically, Rabbi Yosef Sholom Elyashiv’s 100,000 Israeli followers believe they are not allowed to donate their organs until after cardiac death (at which point the organs are dead, too). In case you were wondering, yes, they are allowed to accept donated organs.

The Knesset has passed a law enacting this whole thing. Implementation, however, is up to the health minister … there is no health minister currently, so instead it is up to the deputy health minister … the deputy health minister is—of course—an Elyashiv follower. So, we’ll see.

Does Radical New Way To Boost Organ Donation Discriminate Against Ultra-Orthodox Jews? [AP/Vos Iz Neias?]
Earlier: Israel’s New Organ Donor Policies


Filed under: Embodied Torah, Ethics - The Embodied Torah of Jewish Behavior

Building Community: Legitimate Programs vs. Gimmicks

Divre Harav/Words from the Rabbi

At  a recent meeting of rabbis of small and isolated congregations, we had a discussion about the difference between legitimate program ideas and gimmicks.

All of us struggle with building and maintaining our communities in a Jewish community which is shrinking.  There is a great temptation to grab ahold of any gimmick, trick, or slick program just to get people in the door.  Take these, for example:

Free iPad for the first person to arrive on Shabbat morning each of the next 5 weeks!

Next week – a 15 piece band accompanying the Shabbat morning service!

Tired at shul?  Starbuck’s coffee served before the rabbi’s sermon!

Sometimes we work hard to create a successful program which gets people through the door and into the seats on Shabbat morning, only to find out that all of the “non-regulars” who came and were excited by the program don’t return.  This kind of program is a gimmick – we might work hard and fill up the seats, but we haven’t made any long term impact on the community.

If, however, the program is built up over time so that it adds something to the community, it becomes a legitimate programming idea, not a gimmick.

The difference between gimmick and good programming idea can often be determined by whether it fits into the mission and vision statement of the congregation (see the end of this article for a statement of our mission and vision), and whether the organizing group is committed to maintaining the program for a long term period of time.

The three tongue in cheek examples I gave above do not support our mission as a congregation — it wouldn’t matter how many iPads we gave away, it wouldn’t affect the energy of our Shabbat community.

Scholar in Residence weekends can be an example of a very expensive one time program that might fit into the mission of the congregation, but doesn’t necessary have a long term impact – it brings people out once, but doesn’t build consistent community.

Our religious life committee in general has done well in choosing programming wisely and supporting it long term.  The Sanctuary Shabbat speaker series has been ongoing for 3 1/2 years, and I believe has contributed to our Shabbat community. This year, by the way, I feel especially good about integrating the Scholar in Residence into Sanctuary Shabbat and choosing a scholar who did not charge an outrageous fee.  We had an enjoyable learning-filled weekend and didn’t have to feel guilty about spending $6000 and not drawing DeVos Performance Hall size crowds.

We have consistent (and always fun) parties on holidays like Sukkot, Simhat Torah, Purim, Shavuot, and Lag Ba’omer.  Because they are an ongoing program, our community has come to expect and look forward to gathering together to celebrate holidays.

Help us continue to be successful! The Religious Life committee itself is relatively small, but the job is does is critical to the success and growth of our community.  The committee is therefore seeking to create a “Religious Life Auxiliary,” a group of people who would be on call via phone or email to come help set up or cook for a program, or clean up afterwards.  You will not be required to come to meetings – simply respond to an email request to show up a certain time on a certain date to help.  If you are willing to be a part of the Religious Life Auxiliary, please contact Rabbi Krishef (This email address is being protected from spambots. You need JavaScript enabled to view it. or 949-2840).

Mission Statement of Congregation Ahavas Israel:

Congregation Ahavas Israel creates a vibrant egalitarian Conservative Jewish community helping each individual follow his/her spiritual path using traditional Jewish practice.

Vision Statement:

To achieve our mission, we strive to be to be a community which embodies Torah:  To make every decision and every act reflect our commitment to Torah.


Filed under: Divre Harav - Words from the Rabbi Tagged: Community, Gimmicks, Mission Statement, Religious Life, Vision Statement
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