I was to say the least, concerned. Among the two thousand Pennsylvania Special Olympics athletes, plus coaches, parents and volunteers streaming by, so far nary a Jewish star or kippah to easily indicate someone to interview for this paper. Wait, wait, Lior Liebling’s name is on the participant list. I know him; he’s Jewish. We’re in the same congregations and he was the star in Praying with Lior, a film that documented his bar mitzvah as a person with Down Syndrome.
photo by Barry Bub, MD
Best to seek out the Philadelphia County banner within the one-mile-long opening parade. Hmm, Lior isn’t marching with them, but another handsome teen begins dancing about me with an American flag, saluting me repeatedly. I pause my search to make his acquaintance but he continues his dance without responding. “I’m his mom, he’ll need me to speak for him.” This woman, marching draped affectionately over the shoulders by two youthful participants, explains the doctors had told her to institutionalize her son for life within twenty four hours of his birth. “The doctor said
he would never walk, communicate or be able to function in society.” Special Olympics programs are sport and health educational programs for those from age 8-80 living with intellectual impairment caused by inherited conditions, various diseases, malnutrition, accidents, and fetal alcohol syndrome.
“Now look at him!’ The flag-twirling lad’s mom gestures with visible love and pride. “My son goes regularly for practice with our neighborhood Special Olympics team. You must have faith the Lord won’t give you more than you can handle,” she explains and continues: “Seek out all possible resources, be persistent, don’t listen to the nay-sayers, never give up. He is constantly growing and changing.”
So where is Lior? Could he be marching under another county? Yes! The Philly coach says to look for him with the Montgomery County contingent. Better hustle up to their spot in the parade.
“Say coach, I’m looking for Lior Liebling or do you know if you have anyone Jewish in your delegation?” This woman, a twenty-something coach self-identifies as half-Jewish but non-practicing, and indicates Lior hasn’t joined the parade yet. She introduces me to a Jewish Special Olympics basketball player. He’s a member of Beth Shalom, tells me he had great bar mitzvah and loves music. When he’s called away by his coach to join a team cheer, I bow in appreciation for his time and the parade moves on.
It’s getting toward evening, might as well look for Lior at the opening ceremony. The Penn State Marching Band and cheerleaders at the main gate herald the inpouring of 2000 participants plus surely well over a 1000 volunteers, coaches and family members into the football stadium. Amy, a radiant young athlete is carried onto the field by a Penn State football player who towers over me by at least two feet, his biceps the width of trees. The big screen on the scoreboard displays Amy’s symbolic joy as the crowd roars. Soon county delegations rise, cheer and sit in waves, as the Special Olympics roll of counties is called. Up and down the bleechers I roam seeking Lior, all-the-while taking in the sight of excited youth and adult participants from intellectual disabilities overtly apparent and not, as well as every race, religion and culture within Pennsylvania. Hmm…maybe Lior didn’t make it, even though he’s on the list? Better e-mail his family to check; I’ll ask if they want to we meet up for Shabbat dinner, that would be special.
It’s morning and a new day. I’m at Track and Field where a coach said Lior is listed in the program. While scanning for Lior, I see Amy in a cabana tent chatting, it would be nice to find out more about her. Her mom is with her and upon seeing my press pass and being introduced to my husband Barry Bub, a physician who teaches healing healthcare communication skills, she tells us a bit about Amy’s history. A neonatal test had revealed Down Syndrome and a heart condition; the neonatologist advised her to abort the fetus. “So I changed doctors; that doctor didn’t want to deal with this, that much was clear. I wanted this pregnancy so much. I thought, Well, I’ll deal with problems as we come to them. I really want a child so I’ll keep this fetus.” Amy’s sister Erin adds: “Tell people she’s just my sister, like a normal sister relationship, we play, we fight, we kiss and make up. Amy teaches me to be more caring and responsible, to realize others have more problems. I wish every teen would take a turn volunteering at the Special Olympics; this sure puts my own problems into perspective.”
There aren’t many parents present. I wonder aloud to Amy’s mom as to whether it’s because with so many Special Olympics volunteers, parents of some participants might see this as the rare chance for a weekend off themselves. Amy and Erin’s mom sighs and agrees, “I haven’t had such a weekend yet, possibly when she’s older. That would be good. I’m fortunate, my husband and parents are supportive. My sister, too, she’s a speech therapist and that is also helpful.” Still thinking about religion and spirituality I inquire, “Do you participate in a faith tradition?” The mom looks at me oddly, “We belong to a church, we go sometimes.”
While Special Olympics athletes must qualify as intellectually impaired, my husband now declares me to be “belief-challenged.” True enough. I’ve been asking individuals whether they belong to faith communities, initially almost missing that it is the Special Olympics experience itself that is a living faith community. Special Olympics is a faith community without religious auspices, a community that has faith in each life’s evolving nature within the holy context of support and affirmation within skillful boundaries.
Here at the Special Olympics each athlete strives to attain his/her personal best and reaches out to help the other athletes to attain theirs. While there are various awards, an important one is for finishing in one’s category, be that basketball, long jump, equestrian skills, swimming, tennis, bocce, and much more. Writing this, my eyes rest at the swimming area upon a perhaps thirty-something woman with evident Down Syndrome and other disabilities laboring heavily on a walker to reach her starting position. Her coach helps hoist her up and in the water she swims flat out as near perfect to a pro as I can discern.
Over at the basketball games, an apparently non-verbal near Leonard de Caprio teen look-alike with stares through me. He begins wordless repeated sighing in response to my asking if his team is up next. A coach comes over and explains when the young man, his son Evan does speak, he verbally cuts and pastes remembered lines from movies to communicate. Out on the court Evan runs, leaps, guards a lad who has the ball, who then passes it to him. Aw, he misses the rim shot. Coach Clyde, we learn, is also Evan’s father and with his mother also has an older son with Asperbergers. The referree’s whistle blows, coach/father calls out, “Evan, you can do better than that, you know you can.” He turns to us and explains: “You learn to see past the handicap; they want to be treated like everyone else. He’ll lay back and take the easy road unless he’s pushed. They’ll try to manipulate you just like any other teen.”
There’s no alcohol available and clearly none is needed here for happiness. Spirits soar as each person’s abilities have room to shine. On a tip from a coach who thought he saw Lior at the long jump awards, we head to the outdoor track to find that now wheelchair races are underway and Lior’s group is off visiting other sports. Just one man stops his wheelchair six inches short of the finish line. His coach moves to face him, just behind the line: “You can do it Daniel, I know you can. One more push and you’ll have completed the race, done your personal best. Come on, just a bit more.” Silence. “Daniel, you know you can finish this race.” There no indication that this man, whose physical appearance is tiny, contracted and frail, is even listening…the heat is extreme, who would even want to finish? The sun feels so direct I begin to wonder if my fingernails will sunburn atop the camera zoom. The crowd, at a distance, realizes he’s begun moving again before I do and I’m barely six feet away. The cheering is building in volume, feet rhythmically pound the metal bleechers: “Go, Daniel, go, Daniel…yes, YES!” They’re on their feet for him and yes, his back wheels cross the finish line! Phew…I’m exhausted. As his coach wheels him toward the reward podium, a teen first aid volunteer brings a cup of ice-water and shakes his hand, “You did it! That was great!” She turns to me with an aside, “Volunteering here is the highlight of my year; I always come out.” At the podium, a state trooper in full regalia confers Daniel’s participation medalion to Miss Pennsylvania Teen Dairy Queen. Daniel he bows his head as she places it around his neck and immediately his thin arthritis ridden arms go up in the universal symbol for a triumphal personal best. He finished the race!
Bing! An email about Lior: “He’s there on his own. Thanks for reaching out to us.” So he’s here for sure. Ok, but where?
“Why did you decide to race backwards?” my husband asks as Daniel comes towards the stands. “Because one of my feet drag and stop the chair when I try to race forwards.” Daniel points at two men leaning against the stands behind us, “Ask my coaches, they’ll tell you.” Coach Don readily explains, “Riding backwards, it’s Daniel’s innovation.” Actually, what does a Special Olympics coach do? “I help them understand the rules, practice, loosen up before the games begin, ensure they stay in their lane, administer their medications and help them remain emotionally appropriate. We go through training programs to work with these athletes. Perhaps most significantly, we help them learn how to be part of a team; that’s not always easy.” How did Don get involved? “I have a son with autism. Most coaches here have a family member involved.” Day job? “Scale inspector.”
Don adds one thing more: “I also train future coaches.” He then pins the microphone onto the man beside him, James, who proudly shows me his Assistant Coach tag. Daniel began as a Special Olympics athlete, referred by the special education class teacher in high school. He works in a factory for those with special needs and represents athletes on the Special Olympics board. When his father died he used his inheritance to buy his own home and lives alone. “I am very happy with my life,” Daniel tells us, “I have everything I need. I also hope to take courses one day to become a full coach.” I don’t ask if he practices a religion. What for? The man is the epitomy of spirit.
We head to the stands, maybe Lior’s up there. Against the railing a photo is underway, a young woman wearing a bronze medal in a hug with a probable grandmother and perhaps her mother? I call out a hearty congratulations and they turn to meet us. Turns out to be her grandmother and her aunt Alia, who is her guardian. “Her father died in a tragic accident, and my niece suffered brain damage from chemo and radiation therapy for cancer as a child. Her mom couldn’t care for her, so we took her and her mother visits every week; we’re her guardians. Pointing to the athletes she notes: “Raising these children isn’t for everyone, yet for some of us, it’s a gift to be able to do this.” Alia, along with parent after parent we encounter throughout the weekend describes the experience of community within the Special Olympics as a turning point for the child, from introversion and isolation, to friendships and belief in themselves as worthy people with unique skills and talents. “Through preparing for the games her muscle tone has improved, as have her balance and social skills. She’s now 19 and a total blessing in our lives. Community and support, that’s the critical factor, the turning point. You have to give them a chance. She’s in a job training program at local pizza and coffee shops. Give them a chance, it will bring you such joy!”
Barry looks at me, “I’m heading over to check out the equestrian part of the games. I suppose you’re going to keep looking for Lior?” A random woman with Down Syndrome watching the games beside us reaches out to hold my hand, so I answer him: “I’ll see you later, honey. Let me know what it’s like over there.” As though she’d been evesdropping on my soul, my new hand-holding Special Olympics game date kisses my hand and says: “We play for fun; that’s how you win at life.”
One of the great koans in Judaism is an injunction by Reb Nachman of Breslov, mitzvah gedolah lihiyote b’simchah tamid, “the greatest mitzvah is to live in perpetual happiness.” By God, she’s got it. I think she’s got it! Here, politics and religion are invisibly trumped by support, courage, and persistence. I hope by now, that even I’ve got it.
A favor please. Should you should happen to see Lior, please let him know Reb Goldie sends regards.