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….