JDAIM 2020
During Jewish Disability Awareness and Inclusion Month in February, PAS will turn attention to the sometimes hidden disabilities of mental illness and addiction.
With remarks by Andrea Pollack, by Ronda Wist and by Douglas Schreiber
As a synagogue community, we have an obligation to treat everyone who wishes to enter our doors with respect and without judgment. Park Avenue Synagogue is proud to have begun an inclusion initiative focused on engaging members with physical, neurological and developmental challenges. Our goal is to raise awareness and sensitivity as to how we can welcome and value all individuals as equals in our community. As part of this initiative we are joining the larger Jewish community in recognizing February as the first Jewish Disabilities Awareness and Inclusion Month.
During this month, congregants are speaking at Kabbalat Shabbat services to share their personal experiences with disabilities, and to talk about ways in which our community is striving to grow and evolve. Our first speaker, on February 5, was Lisa Grinberg, chair of the PAS Inclusion Committee, who, alongside Rabbi Cosgrove and Rabbi Savenor, is steering this initiative at Park Avenue Synagogue. Lisa spoke movingly of her personal involvement in this effort and encouraged all of us – those not present at Kabbalat Shabbat as well as those present – to open our hearts and minds, as caring human beings and as Jews, so that we can truly be “a house of prayer for all people.” Our second Kabbalat Shabbat speaker, on February 12, was Douglas Schreiber; Ronda Wist spoke at Kabbalat Shabbat on February 19; Andrea Pollack (Usdan) spoke on February 26.
Our community is not alone in meeting the challenge of becoming more welcoming and accommodating. It is estimated that 20% of the Jewish population, like that of the US as a whole, have some form of physical, developmental, or learning disability. Synagogues and Jewish institutions around the country are bringing these conversations to the forefront and working together to find better ways to be inclusive and accessible. Park Avenue Synagogue is fortunate to be part of those conversations, as we were selected by UJA-Federation of New York as one of six synagogues to participate in a 16-month, multi-pronged initiative focused on helping our community become more inclusive. This is an effort of culture change, from the top down and the bottom up, and of eventual improved accommodations and accessibility.
Hopefully, you have noticed steps towards this long-term goal in recent months
On March 2, there will be a full day hands-on inclusion workshop held at Park Avenue Synagogue hosted by RespectAbility. This is the organization that is working with the UJA-Federation of New York’s cohort of synagogues to help us review our processes, atmosphere, and physical setting, and transform our verbal commitments into realistic enhancements that will make this venerable institution truly a place for all.
This is just the beginning. Our Inclusion Committee, made up of 30+ congregants and staff members, is busy planning and laying the groundwork for future inclusion efforts. We look forward to updating you on our progress and invite everyone to keep this important initiative in mind as you attend services, classes, or events throughout the year. February has been designated a special month of awareness, but for this effort to succeed, we all need to keep this issue at the top of our minds throughout the months and years to come.
If you have any questions or want to be involved in our Inclusion Initiative, please contact Rabbi Charlie Savenor at csavenor@pasyn.org or Lisa Grinberg at lgrinberg@gmail.com.
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Kabbalat Shabbat
February 26, 2016
I want to thank the rabbis and the Inclusion Committee for allowing me to share with you this evening.
A few weeks ago, I wrote a letter to Rabbi Cosgrove to share with him some everyday experiences of being a parent of a 17-year-old with autism. I realized that I rarely share these kinds of stories with anyone but my husband Adam, which does not help to raise awareness in the community of the need for inclusion.
The first story I shared with the rabbi occurred on the morning before Thanksgiving break. When I went into my son Matthew’s room there was blood everywhere. Despite Matthew’s limited language, I quickly determined that the blood was coming from his mouth and that there was some inflamed tissue around his molars. We were leaving the next day for a big family reunion in Florida and I wanted to make sure that we secured an antibiotic before we left. The dentist’s office has always been a place of high anxiety for Matthew, so I was not looking forward to what we were facing that day. I called the dentist’s office the minute it opened – the dentist who has treated my children for their whole lives. I explained what I had seen and asked if I could bring Matthew in for a quick look and for a prescription if he needed one. The receptionist put me on hold for a long stretch. When she returned to the phone, she said, “The dentist said that because of Matthew’s past behavior you are going to have to take him elsewhere.” That’s a quote. Picture it: The day before a long weekend your child has a bloody mouth, and the only dentist your child has known refuses to help.
The other story I shared happened about two weeks after the dentist story. I had taken Matthew out for the day, and we were in a store that did not have a family restroom. Though Matthew can independently use the men’s room, I cannot leave him alone outside of the ladies’ room while I go in. I had no choice. I had to take him in with me – not to use the facilities, but just so that I could keep an eye on him. A woman in the restroom yelled at me angrily, “You cannot bring him in here.” I calmly explained the situation to her and she continued to yell at us. I know that this story sounds like just a small wrinkle, but these experiences of rejection and judgment happen often, they happen everywhere, and they add up. Just last week, Adam and Matthew were in Florida, and Matthew was enjoying going back and forth from the pool to the hot tub. The property manager at the condo where we have been visiting family for the last ten years approached Adam and told him that there was a family who wanted to use the hot tub but did not want Matthew in there when they were. Can you imagine a family making such a request? Can you imagine that the manager did not have either the sensitivity or the courage to decline to communicate such a request?
So what does any of this have to do with Park Avenue Synagogue? It underscores the urgent need to ensure that our community is inclusive. When special needs families are faced with exclusion by dentists, people in stores, and families on vacation, it becomes that much more important to have a welcoming community. When we enter the synagogue, we secretly bring with us heavy baggage from the outside world that repeatedly rejects us and our loved ones. My husband has been a member here at Park Avenue Synagogue since his birth. Despite our family commitment to the synagogue, Matthew has no formal Jewish education because his autism was too severe for him to participate in the religious school. Until this year, I rarely brought him to services because his behavior, such as standing when he should sit and making some random noises, drew judgmental, disapproving looks at him and parent-shaming looks at me. When his thirteenth birthday came and went, he had no bar mitzvah. I pushed aside the grief I felt that I had no idea what it meant to raise a Jewish son who has a developmental disability. I could not see an avenue to lead him to participation in Jewish life, and my inability to include him caused me to want to exclude myself as well.
But here is the good news: Our leadership and our community have made a commitment to examining our programs and our culture and to prioritizing inclusion as a goal. And here is even better news: The opportunities offered by our inclusion efforts exist not only for those currently left out, but for all of us. There is another side to my experience as Matthew’s mother that I also want to share. Matthew has helped me grow my spirit and my faith more than any other teacher could have. Matthew believes in his own divine perfection. As his sister has said, he is the most secure person she knows. He is confident that he is enough, that he is loved because of who he is and not how he performs. When I tried to explain this to my own father, who comes from a time when “long distance” calling was rare, he remarked, “So what you are saying is that for Matthew, God is a local call.” Exactly.
At 17, Matthew still shrieks with excitement when a new magazine arrives in the mail or it is time to open a new box of cereal. He doesn’t care what kind of car you drive, what clothes you wear, or where you went to college. He cares whether you are loving, accepting and honest. Matthew does not value pretense and those who spend time with him are overwhelmed by the experience of being loved by him for their purest selves. Matthew has helped me grow that part of myself that sees the beauty in what society calls “retarded.” He has helped me understand the defects in my own perceptions of the value of prestige and labels and social conformity. He can help us all learn to accept our own imperfections.
I am still learning from my precious son. When people criticize him, he does not internalize the judgment and shame. I, on the other hand, still feel pain from profoundly loving someone who the world often rejects. As I try to teach him how to fit in socially, he shows me how to have compassion for the people who are hard-hearted and who fail to see his beauty. Matthew offers me a gentle reminder daily. When I go into his room each night to turn off his light, my minimally verbal, 17-year-old son spontaneously announces without fail: “I love you so much.” And he means it.
Shabbat shalom.
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Kabbalat Shabbat
February 19, 2016
I am a member of the synagogue’s inclusion committee, but I have been grappling with the question: What exactly does inclusion mean for Park Avenue Synagogue?
Being a good Jewish daughter, I will begin with a story about my Jewish mother. During World War II, she worked as a hostess at a French canteen for Free French soldiers and sailors who found themselves in New York. As you can imagine, her French was impeccable. Fast forward to 30 years later: We were traveling in France at a time when Americans were so low in the pecking order that only Germans were beneath us, but we had no trouble because of my mother’s perfect accent. BUT she had forgotten lots of the little connecting words – words that a 15 year old knew – so I acted as a sort of prompter. And that was my first time in what has become a lifetime of prompting.
Most people know prompters as the hidden people holding the script who make sure that Kelli O’Hara doesn’t miss her lines or her marks. But we parents of special needs kids are prompters, and we’re not dealing with Kelli O’Hara. In addition to typical kids’ quirks, we are dealing with learning disabilities, ADHD, sensory issues, emotional difficulties, social problems, language miscues, extreme impulsivity, perseveration, PLUS puberty, loneliness, and bullying. I could go on but the rabbi only gave me a few minutes. Parents of typical kids, you know all about this, too, but for us – parents of special needs kids – the prompting continues LONG after your kids have learned the lessons. We’re always prompting: "Look him in the eye,” “Hands down,” “Control your body,” “Quiet, “Stop biting your nails...” It’s exhausting.
My husband and I both came from small towns: he from Piqua, Ohio, and me from Manhattan Beach in Brooklyn. We were hoping to find a sense of belonging to a caring community in Park Avenue Synagogue, and in a number of ways it has worked for us. Last March, our son Miles, with the guidance of the clergy and Rachel Sela, had a wonderful bar mitzvah with lots of kvelling and tears of joy.
Before my mother’s funeral in 2013, Rabbi Cosgrove asked if there was anyone who could be with Miles if the service became too overwhelming, but no one fit the bill. So Miles attended the funeral. He wouldn’t sit with Frank and me because he wanted a clear sightline to the rabbi. When someone’s phone suddenly and loudly rang, Miles, like all of us, gave a little jump. But unlike everyone else, he blurted out, “What was that?” and then, “Oh it’s just a phone. Rabbi, please continue.” And later when the rabbi said what a good grandson Miles had been, Miles announced, “Yes I was.” And so with those words, I believe that Miles forged a bond with Rabbi Cosgrove. At Saturday services when the rabbi is diligently trying to shake hands up the aisle, Miles will call out, “Hey, Rabbi, what about me?”
Indeed, what about him? On Saturdays, Frank and I are vigilant that Miles remain quiet, that he not inadvertently invade someone’s space. We often sit next to a gentleman who, when he sees the latest in Miles’ arsenal of full body twitches, offers a subtle, gentle wink. That wink is a lifeline of connection. For some reason, people engaging in conversations that last the entire service feel that it’s okay to look annoyed when Miles sings or speaks too loudly. It’s not okay. Miles – and we – are easy marks. But we remember the wink. Many of the families with special needs children feel a sense of profound loneliness. Every day we wonder, we suffer, and we think about what will become of our children.
Miles ended his dvar torah with “I love being Jewish!” And he really does. How do we, how do YOU ensure that he is always comfortable here? Miles had a bar mitzvah champion in Cantor Lissek. How do we make sure that every child, particularly AFTER the early years, has a champion? A haver? How do we all make sure that this is a place where Miles can learn about Israel, where he can follow the prayers, where he can be a full participant? Where he can always feel proud of being Jewish. I still don’t know what inclusion will mean at Park Avenue when it becomes a reality. But I ask you please to include my son and the others who twitch, stim, and sing. They desperately need to be knitted into the synagogue’s fabric.
Shabbat shalom!
Kabbalat Shabbat
February 12, 2016
I’d like to thank the inclusion committee for giving me this opportunity to address you. The last time I was on this bima, I spoke for myself. Tonight, I’ve asked my mom to read this for me because my speech these days is slow and not always clear.
My parents joined Park Avenue Synagogue when I was four. I have grown up here. The synagogue has been part of my life from Aleph through Bar Mitzvah and high school and beyond. I learned to read the Torah and taught Torah reading to younger kids. I attended MIT and stayed in Boston where I met my wonderful wife. We moved back to NY and have two beautiful children. And we joined Park Avenue Synagogue as a young family.
It was a Sunday afternoon two years ago as we were preparing to leave for Citi Field when our lives changed drastically. Out of the blue, I suffered a hemorrhagic stroke. The stroke left me paralyzed, unable to move one side of my body. The good news is that I’m here! With lots of therapy, I am making progress. The challenges I now face have allowed me to personally understand some of the accessibly issues of our synagogue.
First, let me take this opportunity to thank the Park Avenue community, the clergy, the Bikur Cholim committee, and so many congregants who rallied around me and my family during our time of crises. I didn’t know at the time, but later heard of the incredible outreach that was provided, sending dinners and support for our kids while Amy and our parents were in the ICU with me. To me, this was the epitome of kindness and inclusion. So, thank you.
I am a partner in a private equity firm, and before that I worked in consulting. Some of you might have heard of Bain. We would be hired by companies to make recommendations as to how they could become more efficient and profitable for their employees, management and investors. It is with this expertise that I’d like to share some observations.
I have a problem with prayer books. They slide off my lap. Although I have mastered the art of holding and messaging on a cell phone with one working hand, turning pages on a sliding book eludes me. Perhaps some seats might have a pull-down shelf. It’s wonderful that Park Avenue provides large print prayer books to those who need them, but they are unbelievably heavy and very cumbersome.
Obviously, the bima is not accessible to me. When I come on Shabbat, I sit in the back row in the one spot where a wheelchair can fit. I’m OK there, but when my son is with me, I feel bad that he cannot sit with his friends. If the movie theaters can figure this out, why can’t we?
I’d also like to thank those congregants who voluntarily switched their High Holiday seats in the balcony as I cannot yet manage the two steps to the seats my family has had since 1977. Much appreciated! Last Yom Kippur I couldn’t help noticing that several of our High Holiday neighbors had grown less nimble, relying on canes and walkers. They too had problems negotiating the steps. You see, there are no handrails or anything to grab onto, unless you count the collar of the congregant sitting on the aisle.
As a child, I used to run around the ramp in the lobby, as my kids and yours still do. I never imagined that one day it would serve as my pathway to and from the sanctuary. On days when a Kiddush is served in the lobby, the ramp becomes impassable as congregants often use it as a shortcut to the whitefish salad. This is an easy fix – let’s move the whitefish!
There is one bright spot. If your ACL is not A-OK, or if you have done a face plant instead of a pole plant, you can still attend the children’s services at the Liederkranz. There is a nifty elevator on the side of the building, which avoids all steps.
On a more personal and serious note, I was lucky. Even though I can’t get around by myself and my speech is slower and less clear, my mind is intact. So when you say hi to me, you needn’t speak more slowly or louder. I understand you. And don’t be embarrassed to ask me to repeat something if you don’t understand me. I shake hands with my left hand because that’s what I can do now. Please don’t assume that someone in a wheelchair and/or slow of speech is mentally impaired. Moses had trouble speaking too.
I have many challenges to overcome and I have a long wish list. On that wish list, Rabbi, I would like to be called up to this bima for an aliyah and be able to shake your hand, with my right one.
Shabbat Shalom.