In a Children’s Theater Program, Drama Over a Peanut Allergy – The New York Times

By | January 16, 2019

TURNERS FALLS, Mass. — It seemed like the perfect setting for a shy, thoughtful 10-year-old boy’s first steps on stage: a kids’ Shakespeare program that doesn’t hold auditions, guarantees everyone a substantial speaking role, emphasizes community, and excludes no one.

Unless, as Mason Wicks-Lim and his mother Ali discovered, you have a life-threatening nut allergy.

The conflict that ensued over how the theater could accommodate Mason’s allergy eventually grew into a legal battle that created a rift in the community, highlighting the social struggles that people with food allergies often contend with, even as they fight for equal access.

The turmoil began when the family tried to enroll Mason, now 14, in Young Shakespeare Players-East, a revered institution in this small historic town that takes pride in its arts community and progressive activism. The theater’s director, Suzanne Rubinstein, at first rebuffed efforts to register Mason, citing concerns that no one on staff could be trained to administer an EpiPen, a shot of epinephrine used to treat severe allergic reactions. Then, following months of negotiations, she threatened to close the program if he joined.

As word got around that Mason was not welcome, some of his peers in the program urged Ms. Rubinstein to reconsider. Sam Picone-Louro, who was then 12 and had played a soldier and a senator in the spring production of Julius Caesar, accused Ms. Rubinstein of discrimination.

“You said yourself there are no rejections and you are rejecting Mason,” Sam wrote in an email.

Ms. Rubinstein told Sam to apologize or find a different acting program, and then emailed other families warning them that she would brook no criticism. The program, Ms. Rubinstein said, “is not for everyone.” Sam did not apologize and was not allowed to continue in the program.

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On Dec. 31, the Massachusetts Commission Against Discrimination concluded that Sam was right. The Shakespeare group may have not only illegally discriminated against Mason, the commission said, but also retaliated against Sam for speaking up. Two years earlier, in June 2016, the United States Department of Justice had reached a similar conclusion, saying that the theater violated the Americans With Disabilities Act by failing to make reasonable modifications to accommodate Mason.

The Massachusetts commission has ordered the Shakespeare group to settle with the families by Feb. 5 or face a public hearing and possible sanctions, said Mary Vargas, the lawyer who represents the two families.

Ms. Rubinstein did not agree to an interview, but YSP East’s lawyer, Frank DiPrima, said that “Mason was always welcome to register.” He said that Sam, who is transgender and uses the pronouns “they” and “them,” would have been welcomed back, had they been more respectful.

“We’re going to try, for the benefit of children past and future, to conciliate,” Mr. DiPrima said. “No other program of this size has done as much to accommodate children with disabilities.”

For Mason and Sam, the legal victories are bittersweet. The repercussions of the ouster from the theater group, which included many of their friends, affected the families as well as the children. Friendships frayed, and some ties were severed.

Many children with food allergies experience exclusion and discrimination, which “can be more detrimental than the allergy,” said Dr. James Baker Jr., a professor of medicine and director of the Mary H. Weiser Food Allergy Center at the University of Michigan.

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“We hear this all the time, where people isolate kids, tell them they can’t go places, tell them they can’t participate in after-school activities or that their parents have to be there if they’re in a soccer game,” Dr. Baker said. “The child starts to feel like he or she is the problem.”

Though legal claims are rare, the number is likely to grow, due in part to a 2008 amendment to the Americans With Disabilities Act that has made it easier for people with food allergies — who are perfectly healthy most of the time — to qualify as a protected class, Ms. Vargas said.

In Mason’s case, his mother said she tried for six months to find a solution that would make it possible for Mason to join the Shakespeare group.

“My approach to Mason has always been that ‘you can do anything anyone can do, except eat nuts,’ ” Ms. Wicks-Lim said. “And before this happened, it had never occurred to him that he might not be welcome in a place.”

The Young Shakespeare Players-East meet at the Shea Theater Arts Center in Turners Falls.CreditMonica Jorge for The New York Times

In August 2015, Ms. Rubinstein emailed Ms. Wicks-Lim to say that she would have to be at the theater during rehearsals in case Mason needed an EpiPen injection.

After a lawyer informed her that the law required accommodating a child with a disability like a food allergy, Ms. Rubinstein reversed herself and emailed Ms. Wicks-Lim that she was seriously considering “whether to close shop!”

A few weeks later, Ms. Rubinstein said that the theater would implement a peanut- and tree nut-free snack and lunch policy and that she and another adult staff member would learn to use an EpiPen. But the same email said that the children in the program — ages 8 to 18 — were often left without adult supervision “for hours at a time (full days).”

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In September, Ms. Wicks-Lim decided she could not safely enroll Mason. She let Mason make the call about whether to file a discrimination complaint.

The rift in the community intensified after the complaints were filed. The local newspaper printed letters from residents saying the YSP should not be getting negative press because “of one or two disgruntled parents whose children have food allergies.” YSP-East portrayed Ms. Wicks-Lim as a mother “who refused to accept responsibility for her son’s medical condition.” She was barred from a mommies list serve.

Sam became disillusioned when friends from the theater group — who had been “like a second family” — failed to stand up for Mason, and soon became alienated from their old community. “So much of who I am is about standing in your truth and standing up for people, and having your moral judgment shape your decisions,” Sam said. “But everyone turned a blind eye.”

Both children have pursued other interests. Sam joined another local theater group, and Mason has taken up competitive rock climbing and is active in kung fu, where the group often asks him to choose the snacks. In 2016, two organizations honored Sam and Mason with awards for their advocacy on behalf of people with disabilities.

“I decided to fight the fight because I didn’t want someone else to experience what I did,” Mason said. “If there were no consequences, the same thing would happen again the next time a child with a food allergy wanted to join.”

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