Beth is our Scholar in Residence this Shabbat, February 24 and 25, as we honor Jewish Disabilities Awareness and Inclusion Month. Join us for Friday evening services at 6:00 pm, Shabbat morning at 9:00 am and stay after Kiddush for more learning with Beth.
My son’s challenges are significant but I’m not afraid.
I am unsure about the future. His happy adulthood, my happy years as an older adult. What are his rights, what do I deserve, what will be the responsibilities his older brothers will shoulder? Will he be happy?
I worry he might not be happy. But he’s almost always happy. That makes me less afraid.
When I write about Akiva – his needs, his challenges, my challenges – I choose my words carefully but I am not afraid. Except for when I hit ‘publish.’
When I talk about our journey as a family – the tough moments, the tearful moments, the moments that I just wish it were different – I try to be honest. I know honesty is important. I know many people pity us, pity him, don’t truly understand what it means to be his parent, his full-time advocate, his person, his people, his caring community. We’re the people who help him shower and dress, who care for him when he is sick, who sing songs with him. We’re the people who love him. Sometimes, I wish it were different but I am not afraid.
When I post a picture of Akiva, I choose the happy ones, the ones where his cute, uneven teeth, his often crossed-eyes, his sometimes grubby face, are softened by the happy smile on his face. He’s kinda funny-looking but aren’t we all?
I am not afraid to show the face of disability – his disabilities that is – via my son. I am not taking advantage of his well-being. I am letting the world know that disability is happy, disability is every emotion and more. Just like not having a disability is so many things and so many emotions and so many experiences.
I am not afraid of exposing us, of sharing him. While I know he’s unaware of this exposure, I know that showing him to the world, my extended world, will help ease fears and misconceptions about disability. I hope.
But I am afraid of a world that treasures beauty. Where skinny bodies and 6-pack abs, along with being blonde and gorgeous, is regurgitated on television and in movies. There are few positive images shown of real people who look different, as opposed to actors playing a part.
I’m afraid for other parents of children, teens and adults with disabilities. Those who feel unsure that the world will appreciate their loved ones. That the world will look kindly on their stories. Their tales of difference and challenge, of unusual beauty lost and found.
I’m afraid of a world that divides people up according to who can and who can’t. A world that divides those with disabilities according to who’s got this and who’s got that. A world that decides who’s high-functioning – whatever that really means – and who’s not. A world that sentences you and judges you for your difference without knowing what that really means.
So, I work past the fears. I tell his story. I tell our story. I invite you in, to read, listen and comment, so that you can understand and appreciate. So you can smile at the different-looking-behaving-whatever person the next time you see them on the street and be glad that they’re a member of your community. Because their people, those who love them, need you to try to be less afraid.
“And a rock feels no pain. And an island never cries.” Paul Simon
In this mission to remain positive, I want to acknowledge that there are certain situations when grief is deep and time is a key component in the healing. And I also want to acknowledge that there are instances when a positive disposition is not enough.
I’d like to share with you the power of positive thinking and the importance of seeing the good. I’d like to share with you the story of my father-in-law, Kenny Hersh. As a child growing up in New Jersey and, later in life, in Providence, Kenny was someone who took full advantage of every day. He trained and ran 5Ks, was the first one on the dance floor at a simhah, played clarinet in a klezmer band, could manually mix paints at work to match any color, and volunteered at his shul. He was an incredible father, a loving husband to his wife Leah, and for better or worse, a Yankees fan. After working as a high school guidance counselor for a few years, Kenny eventually joined Leah’s family business, American Wallpaper in Fall River, MA. After a series of inexplicable falls and some problems with his coordination, Kenny visited medical experts in Providence and Boston. Through a series of tests, Kenny was diagnosed with Primary Lateral Sclerosis, PLS. A degenerative neurological condition that weakens voluntary muscles. Although relieved to finally have a diagnosis, the condition would mean increasing difficulty with basic tasks like walking, eating, and speaking.
That was more than 10 years ago. And yet, despite the challenges, despite the muscle stiffness, despite the difficulty speaking, despite the mobility issues, despite the fact that he often communicates through his ipad, despite the slips and falls on to icy sidewalks, despite that nearly everything takes longer and can be more frustrating, Kenny continues to be an unstoppable and unignorable presence in our family.
Whether you just met Kenny or you’ve known him all your life, it takes only a few minutes and a few keystrokes to appreciate Kenny’s charm, his humor, his kindness, his compassion, and his intelligence. Kenny continues to go to the gym, using the stair climber to reach the top of a 110-story building every week. Kenny continues to, despite all logic, drive and put in a day’s work at the family business. Kenny continues to be a comedic force at family meals, Kenny continues to be an ezer knegdo, a perfect partner to his wife Leah, a wise and loving parent to his six children and children-in-law, and perhaps most importantly, the most playful and treat-giving saba to his eight grandchildren. Rather than wallow in his sadness, Kenny makes the most out of every day, with a spirit and a love of life that is enviable.
I recently asked Kenny, if he ever got frustrated. “Of course! There are things I miss, but the thing that I find most frustrating is the inability to speak. I love to talk and that is frustrating. I would trade off being in a wheelchair to be able to speak freely again. It is especially hard dealing with my wonderful grandchildren. I would love to be able to read to Nadav and Eliana in English, Spanish, or Hebrew. What joy I miss in not being able to sing with them and talk with them. What a pleasure it would be to walk with them on the beach and swim with them; to run with them, to fly a kite with them and crawl on the floor with them. As I have seen with Micah, [his 7-year-old grandchild], once he was able to read, our relationship really grew as we were able to laugh together and have a “conversation.” I look forward to the day when I can do that with all my grandchildren. I think that there are choices when put in a situation like this: crawl under the covers and hibernate or try to work around the challenges and move forward and enjoy an exciting life. I choose the latter. I don’t want a pity party, but just the realization that I am still the same person I always was, but with a disability. I have so much to be thankful for and get inner strength from my wife, children, and grandchildren. They make me want to push the envelope to be an important part of their lives. Our friends and community in Providence and around the country give me support and make me feel included as an intelligent and mindful part of their lives. And of course, having fun and being able to laugh makes this ride much easier.”
My friends, I do not deny that there are problems in the world. I do not deny that there are times when we feel that we have insurmountable challenges. And I do not deny that at times we have to embrace that sadness. But in 5777, I implore you to also look for the positive in the world. Just by the virtue of where and when we live we are blessed with so much. It is okay to not be burdened by sorrow all the time. It is okay to focus on the positive. Not because we need to ignore the negative. Adarabah, to the contrary, because it is only by recognizing the good that we can tackle the bad. It is only by crying that we can feel the joy more deeply. It is only by rejoicing, that we can be there to understand someone’s sorrow more deeply. Let us cry together. Let us rejoice together. Let us feel the full spectrum of human emotion in the new year.
Rabbi Michael Fel
There are those times though… I’m human, I fail, I fall short. In my family, we have a Christmas Eve tradition of meeting all the Hartmans (my in-laws) for dinner at a kosher restaurant in NYC. This year, the night was unseasonably warm and dry. Some rain earlier in the day had cleared out. The parking near midtown was typically tricky so we had several blocks to traverse to get from our parking garage to the restaurant. Our start into the city from home was typically late so we were in a bit of a rush. It’s those times when I’m a bit stressed that the young boy with sharp teeth comes back. I was going to set the pace and it would be brisk. I was going to push the wheelchair myself. Well, I should have thought that one through. The second curb that we came to was hidden under dark puddle of rain water… at least I hope it was rain water. I approached at “lift off” speed. Unfortunately, my wheelchair didn’t “lift off” … the wheelchair stopped cold. You know what else was cold? The water was cold! I know because I bounced out of my wheelchair and was sitting in that puddle and soaked to the skin. My wife and a kind stranger helped me back into the wheelchair. I hadn’t learned my lesson yet though. I was still intent on pushing myself. That wasn’t the last time I fell out of my wheelchair that night…twice more. I was very stubborn; I was very wet; I was very cold. Ever sit through a 2-and-a-half-hour dinner with wet pants? After you were three years old? That was a 4-scotch dinner. The story I tell now has Hara pushing me into the puddle and trying to drown me for the insurance….
As Bruce Wayne’s father said to him, “Why do we fall…? So we can learn to pick ourselves up” Forgive me for having the audacity to think I could improve on Thomas Wayne’s quote… “Why do we fall…? So we can learn to accept the blessing of help from others.” But you should still watch out for the sharp teeth.
I’ve enjoyed telling you this story. I hope you’ve found it fun and amusing. It’s true in all its absurdity but I would be remiss if I didn’t add a serious aside. The blessing in allowing someone to help me is only fully realized by me when I am confident that I could achieve the same physical result without help. In other words, if physical barriers exist to my access to a place that I reasonably want to go on my own (i.e., reasonable means not necessarily access to the peak of Mt. Everest) and the place is accessible to the average Joe, my joy and fulfillment are diminished. It’s complicated, I know….
To grapple with my limited visual world, I make greater use of hearing and touch, and occasionally, even a bit of sight. While many people presume that blind people have enhanced levels of these senses, that is often not the case for me. My tricks using these other senses are successful because of my increased focus, not greater capability. Some of these skills develop through instinct, more through notable attentiveness. Listening for sounds is important. Individuals have different footsteps. Among those with leather soles, men are always heavier- sounding than women, and children are in a class by themselves. If I hear you walk on a hard floor first thing in the morning, I’ll probably recognize you at lunch time. Rubber soles? Forget about it. Voices and speech patterns are also clearly distinctive. If you introduce yourself to me often enough, eventually, I recognize your voice; a pleasant thing for both of us. One of my new mottos, pertaining to the fact that I cannot, with confidence, discern the words or symbols “Men” or “Women” on a restroom door, is “thank God for urinals!” 😉 In fact, finding the restroom is at times a bit of a challenge, especially in a place where I have never been before. Even though there are many amusing stories about my escapades finding the right restroom, the question “Where is the restroom?” is easily answered by plenty of friendly waiters who are happy to direct me. Good luck asking the ensuing question on the return trip- “Where is my table?”! The important thing to remember, I’ve learned, is always look around and count the number of tables along the route to the restroom. Counting is always a very important tool. Most notably, counting the number of steps on my way up a staircase and remembering that number on my way back down, is a great way to help keep me on my feet. If my companion leads, counts, and announces the number of steps, that is truly, as long as it is precise, very helpful. Another strategy that often leads to amusing outcomes is using my sense of touch. For example, it is not unusual to see me tapping my fingers around on the dining table until I find the salt shaker. Touch, in circumstances like this works quite well. I’ve learned however, that an important area in which I can get in trouble using this technique is when “looking” at a woman! 😉 I can go on and on with anecdotes; hopefully, you have gotten at least a bit of the picture.
So, how can you be most sensitive to my needs? I think that the following observation applies to most all physically challenged people: remember we all want to work on our feelings of independence. Saying “Can I help you?” is always a thoughtful thing to do. When you hear “no” in response, don’t push. On some occasions, I don’t just say “no,” but rather “I don’t know,” followed by “if I can do it myself, I’d much prefer that. If I find I need help, I’ll ask you.” You can always help me most by using words, not by grabbing or otherwise touching me to guide me, and remembering that your words should not include gestures. “Over there” is rarely helpful. “Watch out” or “look out,” are for obvious reasons, not useful phrases when communicating with me. I feel least “exceptional” when I can be most like everyone else.
I write this post from Ben Gurion Airport at Gate C-9, waiting for the flight home to be with our OJC community for Shabbat. I look forward to sharing with everyone the depth of learning I experienced during the past four days in Israel.
Thirty committed Jewish lay leaders and professionals from Rockland County sat in a beautiful room overlooking the Mediterranean in the ancient town of Jaffa for many hours each day. We represented twelve different Jewish organizations and with the assistance of SIT (Systematic Inventive Thinking), we learned to innovate, discuss, plan and activate. But most of all, we learned to weave.
The purpose of our seminar was to weave the Rockland Jewish community together with enough strength and beauty to last m’dor l’dor, from generation to generation.
How exactly were we weaving? What did we hook onto the wood and anchors of our loom? How did we interlace the warp and weft of the threads? Our warp was our call, our strivings, actions and teaching. Our weft consisted of our anchors, the safe people and places, our Jewish homes, our synagogues and schools and organizations.
The trick about weaving is that from where we stand below, it looks like chaos. There are knotted threads, frayed or cut, mistakes, uneven spots, mismatched colors. But on the front side, the top side, the side that is hidden from our view, perhaps even the side that God sees, there the weaving is perfect. The patterns are clear, the colors blended, the stitching precise. Our work thus requires just a little bit of faith.
We went to Israel to learn how to weave because our homeland has been the wellspring of Jewish inspiration for thousands of years. We were inspired indeed by start-ups and innovators and programs for social justice . We learned to pull out the essence of the ideals undergirding the innovation and collaboration and imagine putting it to use in Rockland.
We heard from the company SpaceIL that is building Israel’s lunar rover and from TOM, Tikkun Olam Make-a-thon. We learned about Dror Yisrael, urban educational kibbutzim and Ruach Chadasha, program to revitalize young artistic life in Jerusalem. And so much more…
Inspired by the innovation all around us, I look back across the ocean toward home just before boarding and start thinking about ways to make the life of our Rockland Jewish community strong and vibrant. I am grateful to my OJC partner on this journey, Matt Schiering as well as fellow OJC congregants representing Federation, Carol Blau and Andrea Weinberger. We all invite all of you to join us!
The weaving work has only just begun…
Shabbat shalom, Rabbi Paula Mack Drill
The traditional names for the synagogue–beit knesset, beit tefilah, beit midrash–connote a house of assembly, a house of worship and a house of inquiry and learning. These days, the synagogue is also considered the center of a faith community.
What does it mean to me to be a faith community? It means collectively embracing a hopeful and optimistic view of the world, where faith in God, in people, and in the potential Godliness of every person shapes values, morals and personal choices. In keeping with the ethical codes of our sages, it means giving others the benefit of the doubt without taking unreasonable risk to one’s own well being.
Judaism’s prophetic tradition envisioned a world order where all people would ultimately see God as one and recognize one another as the creation of that one God. In post-Biblical times, this vision of an era to come (olam ha-ba) was transformed into an other-worldly vision, one that could only arrive through divine intervention. Some even embraced the idea that a super-human or semi-divine figure would be needed to bring about this new world order.
Our sages of Rabbinic Judaism brought us back to our emphasis on human agency. We don’t rely on divine fiat to bring about the days of the era to come. Our messianic age is not ushered in by God, but by those of us here doing the work of God.
Israel and America are two potential entities through which this new world order can be brought about. There is nothing wrong with America or Israel wanting to put themselves “first” in this new order, so long as being first doesn’t mean being exclusive. Being first in this order means leading the way for all of humanity to ultimately be a part of the same vision, the same order. If I am first, and no one is following, then I am also last. Isolation and exclusivity did not fit with the prophets’ notion that Judaism’s values would serve as a light drawing humanity to unite as one.
As a leader of a faith community, I will continue to have faith in God; in people; and in policies that move us closer to a world order where all people search for the image of God in others. Our assembly, our worship, our inquiry and learning all point us in this direction as a worldview. Your vision of where we need to go as a society, as a country, as a world or as Jews may differ from mine; but as someone (who doesn’t see the world as I do) recently told me, I must speak the words that are in my heart. They are the wisdom of my experiences and my truths, and my responsibility to espouse in leading a faith community.
I don’t seek to be political in my views or to take sides. Different times demand that different values be prioritized and championed. I will speak out against Islamic fundamentalism that threatens my security and I will call out Jewish fundamentalism that chips away at my identity. I will warn against Islamophobia and I will defend against anti-Semitism. I will advocate for the rights of women to control their own bodies and I will demand the need for people to make responsible choices. I will educate for Jewish continuity and I will explore new ways to welcome interfaith households. I will support the rights of countries to protect their citizens, and I will march to demand the protection of the stranger, the vulnerable and those who can’t protect themselves. I will teach towards a greater awareness of the needs of people with disabilities and I will push for us to see one another as people first. I will own responsibility for my actions and I will accept the collective responsibility we have to our neighbors.
These are the values, among others, that I believe our faith community must advance in moving our world toward a better era for humankind. May that time come soon and in our day.
Rabbi Craig Scheff