Why My Blind Son is Coming Home on Sunday, part 2

Just a little more than 48 hours ago, I was told that my blind son Solomon needed to come home on Sunday. It was a decision made by the director of Camp Ramah in Canada in consultation with a number of staff members.
A few minutes ago, Solomon told us that he is coming home on Sunday. This time, it is his decision. In the past 48 hours, a number of remarkable things happened.
First of all, I’d like to reiterate the fact that for the past five seasons, Solomon has been under the care of some remarkable counselors, teachers, waterfront staff, and other professionals at Camp Ramah in Canada. He has been supported, taught, and guided with care and love.
Due to a series of unfortunate circumstances and extremely poor communication, the tremendously painful events described in part one of this post occurred earlier this week. The response to my article was for the most part supportive and helpful. I am grateful for all who commented on the blog, reposted on facebook and/or commented there, and otherwise spread the word. At the same time, my 12 year old daughter Sarah started a petition drive at Ramah to support Solomon, collecting 240 signatures. Other staff members approached the director offering to take a larger role in helping out Sol. The result was that the director experienced a complete change of heart regarding how he handled the matter. He called and expressed a sincere apology, to Solomon, to me, and to my wife. He took a second look at how staff could be assigned for the second month. He assigned one more person to be Sol’s advocate, and at my request, assigned a new parent liaison, Hillel Kurlandsky, to be Sol’s Yoetz, advisor/social worker.
Marisa and I were satisfied that the director sincerely realized that he had made a serious mistake, and took all of the necessary steps to correct it. At this point, the final decision of whether to stay for the rest of the summer was Solomon’s. Given all of the emotional upheaval that had occurred, we were not 100% sure that Solomon would still want to stay at camp. Sol and Hillel had two lengthy conversations, each more than an hour in length. I wish I could have been a fly on the wall. Hillel reported that Sol was remarkably mature and clear in his analysis of why he should stay — primarily, because so many people had worked so hard to reverse the decision of the camp — and why he should not stay. Of course, I wish Sol would have chosen to stay, but given what he’s been through, I understand why he has made the decision to come home.
I don’t know if he still wants to go back to camp next year. I don’t know if we can or should try to convince the camp to make allowances in a program designed to train counselors and other support staff, to accommodate a camper who currently does not have the ability to function as a counselor in training or a helper in most areas of camp. I’m sure that if the camp was willing and if Solomon was committed to it, we could find an area in which he could contribute meaningfully. I think we need to take a step away from questions about camp right now, and come back to it in a couple of months after the strong emotions have faded somewhat.
In the end, I want you to know that I still believe in the Camp Ramah experience, and I think I can rebuild my love for Camp Ramah in Canada. This unfortunate episode appears to be the result of a chaotic transition to new leadership; a new director, Ron Polster, who blundered quite badly. Ron, I want to thank you for acknowledging your mistakes. We are all entitled to make mistakes, as long as we learn from them and make appropriate apologies to those we harm along the way.
To those dedicated Ramah staff who I have hurt in the past 48 hours, I apologize. I am sorry for the damage I have done to the reputation of Camp Ramah in Canada by bringing this event into the light of public scrutiny. I did so only because I thought it was the only way that I could effect change.

“Special” needs?

What is is that they say about the children in Lake Wobegon?  “… where all the children are above average.” Of course, when every child is special then no child is special, and that’s the way it is supposed to be.  At this past weekend’s CRUSY kinnus at Beth El in Pittsburgh, every child was warmly received and brought into the program.  There were no special needs.  There was only a conscious effort to provide everything that was needed to make the program fully inclusive and accessible.
This post is my periodic plea to congregations to consider what it takes to be accessible to a blind person who happens to walk through your door on Shabbat.  It doesn’t take much.  This year, Beth El’s inclusion committee decided to purchase a set of the Braille volumes of Sim Shalom and Torah.  They actually only needed to acquire five of the nine volumes of the siddur in order to satisfy the needs of a regular Kabbalat Shabbat, Shaharit, Minha, and weekday morning.  Knowing that they were hosting the kinnus, they also purchased the volume of Torah and the haftarah for that specific Shabbat. All of this is easily available from the Jewish Braille Institute.
When my son Solomon arrived at kinnus, he was not special.  He dovened just like everybody else, with his Braille siddur.  He went up to the Bima and led Torah service.  It was no big deal.  He just participated in leading a part of the service, something that a couple dozen USY’ers did over the course of the weekend.
However, it was a big deal to his father who was standing in the back of the sanctuary with tears running down his cheeks, because at that moment his son was not special. Like thousands of youth before him, he was given the honor and privilege of participating in a Shabbat with his USY friends.
One day, Solomon might show up at your synagogue.  When he does, are you going to make him feel ‘special’ by requiring him to bring his own very bulky set of books, or are you going to make him feel like a part of the congregation by giving him a book, just as you will undoubtedly do for every other person who walks in?
For more detailed information on how to order a standard Shabbat set of Braille volumes, contact me at Rabbi@AhavasIsraelGR.org.

Welcoming Chaverim, for Developmentally Disabled Adults

Reposted from my friend and colleague Rabbi Paul Kipnes’ Blog:

Torah teaches, “Do not place a stumbling block before the blind.” The RiPiK, a twentieth century commentator, suggested that beyond refraining from placing blocks, we should actively remove stumbling blocks. To what might this be compared?

A story…

Even as the Director of Chaverim, a local program for developmentally disabled adults asked the question, his discomfort was evident: “How do you feel about opening your congregation to a local group for developmentally disabled adults?”

“Why wouldn’t we?” I asked.

“We’ve been to other synagogues that have opened their doors, only to feel slowly push us out, after their members became uncomfortable with the presence of our members,” he responded.

The conversation continued. “What’s the worst that might happen?” I asked.

“We have one member who can sing loudly, and sometimes off-key.” He paused, “And you might have someone read slowly, completing a communal reading after others have already finished.”

“Sounds like some of our current members.”

“However, they will usually be accompanied by the Chaverim program director or program rabbi, either of whom will help direct our members if necessary. Would you like to come by one of our events to check out the Chaverim members?”

“Why? Give me a heads up when you think there might be an issue. Make sure that in the early months you attend services only when I am leading them. That way I can witness and deal with any issues that might arise.”

So We Welcomed Chaverim
“Yes, we would love to welcome you,” I said. “Let me speak to our Board in two weeks, when I know they will openly embrace the idea and your members. We will extend to any of your members full membership at our synagogue. Two High Holy Day tickets per Chaverim member – one for the member, one for his/her driver or guest. We will make you, as Director of Chaverim, a complimentary synagogue member, so that we can give you access to our synagogue afterhours for use during your scheduled programs and classes. We ask only that your members fill out a synagogue membership form so we can get them into our system.”

“They should pay membership dues,” he said. “So that they have a sense of commitment. How much should they need to pay?”

“We won’t care. Whatever you think is appropriate. No more than $50; no less than $10. We only ask that they pay it in one lump sum, to ease the work on our bookkeeper. To make it easier, you collect the forms and information, and pass them onto my assistant, who will oversee the processing of the forms.”
“Are you sure you don’t want to meet them first?” he inquired.

“Listen, we pride ourselves on being a congregation that is open and welcoming. And we have families with developmentally disabled children and relatives. So no, I don’t need to approve them. They are Jews. Let them come home.”

Not a Mitzvah (good deed), but a Mitzvah (religious obligation)
It saddens me when I hear kvelling about how this synagogue or that is especially accessible to people with disabilities. This is no mitzvah (colloquially, a good deed); it is a mitzvah (literally, a religious obligation). It is the responsibility of every Jewish community to make Jewish life and celebration accessible to every Jew and Jewish family. We strive to remove stumbling blocks from before all Jews – including those with disabilities.

As expected, the Board discussion lasted less than five minutes. The motion to welcome Chaverim was a “no-brainer.” Our CFO and his wife volunteered to be the liaisons with the program; our Program Director was tasked with smoothing the process from the staff side. We created a new membership category called ‘Chaverim,’ though we were aware that it would be a few months before anyone would officially sign up.

The next week, we designated a few Friday nights as Shabbatot when they would officially come worship with us. As I had been informed, only a few Chaverim regulars showed up at the first services to check us out and to make sure we were welcoming. Based on guidance from the Chaverim Director, early in the service when we welcome others, I just said, “We welcome our members who are connected to Chaverim, a program for developmentally disabled adults, ages 18-88.” We did not ask them to identify themselves at that time; we let them just be Jews at services.

A Service Honoring Exceptional People
We are now close to a year into our relationship. I am told that Chaverim members have attended services regularly and appreciate NOT being singled out. They hang out at the oneg like everyone else; last week I enjoyed watching our president chatting up a few Chaverim members, just like she does ever other non-regular who shows up at services. A few read prayers in our annual Service Honoring Exceptional People (our annual “Special Needs” service); others sang along and just felt like they belonged.

All because of one 20-minute phone call, one email from the Rabbi, five minutes in a board meeting, and a few calls by the Program Director. All in the span of a month.

That, and because we took seriously the Torah teaching, “Do not put a stumbling block before the blind.” It should be that easy. Please tell us your story.

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.


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.


A Statement on Inclusion and Accessibility

A Statement on Inclusion and Accessibility

While many congregation have a good basic understanding of “accessibility,“ just as many have not yet really spent time examining their buildings and their programs with a broad goal of ”inclusion” in mind.

Inclusion is more than installing ramps and lifts and accessible bathrooms. Modifying our physical plants to make them accessible is inclusion at its most basic level. When we speak about inclusion and accessibility within our congregations, we ought to be aiming above this basic level towards a level of full inclusion.

The theology of full inclusion is based on the idea that human beings are created in the image of God. To spell this out in the most challenging way — it is remembering that people on the autistic spectrum and neuro-typicals; people with 46 chromosomes and people with 47 chromosomes; people with visual or auditory impairments and sighted- and hearing-people; people who move around on wheels and people who move about on legs; are all equally created in the image of God.

Inclusion means proactively modifying our sanctuaries and social halls, our synagogue programs, our religious school programs and our Kiddushim, to provide nut-free, gluten-free, dairy-free food alternatives, and to address the needs of students with ADD, ADHD, Autistic Spectrum Disorders, and other physical and mental differences.

Inclusion means that we plan for the unexpected visitor and provide a Braille Siddur. We don’t say that we have no blind congregants, so we don’t need to provide a Braille Siddur. Inclusion means that we plan for the unexpected visitor with a hearing impairment, and provide a hearing amplification system. Inclusion means that we make ourselves open and welcoming to all visitors, potential members, and potential Jews.

Inclusion means that we are self-critical in our examination of our institutes for a culture which explicitly or implicitly views the differently-abled as “broken,” “in need of fixing or healing,” or “deserving of pity.” A truly inclusive religious community is one which thinks of each person as wholly representing a positive and unblemished image of God.

Beyond Ramps and Lifts:  Some resources to make our synagogues inclusive of disabled visitors

Large Print Resources

The USCJ and the RA have published large print editions of Siddur Sim Shalom, Siddur Sim Shalom for Shabbat, Siddur Sim Shalom for Weekdays, and the Harlow Mahzor. They have not (yet?) published a large print Etz Hayyim Humash, but I understand that they have given at least one congregation permission to enlarge and photocopy the entire book in sections.

Braille Resources

The Jewish Braille Institute (jbilibrary.org) has published several Siddurim (Orthodox, Conservative, Reconstructionist, and Reform) in Braille, as well as Torah and Tanakh (English and Hebrew), Mahzorim, Haggadot, and more.

Hearing Impaired Resources

The telecoil (T-coil) is an assistive listening system which broadcasts the sound directly into the listener’s hearing aids. The hearing loop technology is used by many airports, theaters, auditoriums. See hearingloop.org for details.