Holy crow! There is almost nothing simpler to learn than how to inject an epi-pen. Anyone who can't deal with it should not be in the business of working with children in any manner. One would assume that she is also not trained in CPR or any other lifesaving skill. Would she operate a fire-extinguisher?
Is it even legal to have minor children in your care, only to leave them alone without adult supervision all day (full day, in the woman's own words)?
As a parent and a teacher, I've toted around the epi-pen, the insulin kit, you name it. We hear stories of teachers who would literally take a bullet for their students. And this woman wouldn't even harbor the idea of an epi-pen.
3
I'm a teacher and recently had an extremely nut-allergic boy in my class, so there was a "no-nut" rule implemented at snack time. One student was devastated about not being able to eat Nutella in the classroom, so we devised a system where she could eat it in the office during snack break, wash her hands, and return to the room. Needless to say, after two times, she decided her beloved Nutella wasn't worth being excluded from snack time with her friends, and she chose to bring nut-free snacks. It made for great discussion about why we shouldn't exclude kids with allergies...they have no choice. And also, what's more important, your favorite food or your classmates?
4
Ms. Rubenstein sounds like a real sweetheart.
1
This is a tough one. From the limited snippets we get from the director, no, she doesn’t sound sympathetic. However, I’m also sure she didn’t want to promise something she wasn’t entirely sure she could deliver. I’m a parent of two healthy children, and honestly I wouldn’t be comfortable leaving them in the situation described in the comments: dozens of kids under 16 almost alone (one director and some 17-18 year old volunteers) in a building? There are a lot more things that could happen than peanuts being brought in. I’d think at the very least a rotating schedule of parents could be present on premises to oversee the events - not to direct, intervene in theater decisions, or etc - just to be there. Sit in a hallway. The mother of a child with a potentially fatal food allergy can’t see the wisdom in choosing a program with a smidge more adult supervision?
All that said, I have long volunteered with young programs and knew how to use an epipen by the time I was 20. The tiniest volunteer programs anywhere I have been have at least been aware of anaphylactic food allergies and made reasonable accommodations. It’s not at all impossible. If you work with kids - get with the program!!
2
Additionally, another part of Red Cross cpr training is in the use of the defibrillators ehich are becoming more and more common in public places.
Perhaps it would be a good idea to require, or provide to more teachers, workshop leaders, and bus drivers, etc., training from the Red Cross. As a member of the staff at a not for profit school, this was required of me, and one unit of the one morning certification for CPR, was devoted to the use of epi-pens. By the way, they are extremely easy to use.
1
Having an epi-pen available where people congregate would be invaluable for anyone exhibiting the signs of life-threatening allergies. It could save the life of someone who didn’t know they were vulnerable. Just like a defibrillator. The life it saves could be yours.
4
I am absolutely in awe of the two children - Mason and Sam - who stood up for what is right for themselves, and for others. They are an inspiration. I plan to tell my own children (one of whom has a number of severe life-threatening allergies) about them. I know that they, too, will appreciate the courage it took.
I admire Mason's mother for advocating not only for her own child's rights and safety, but also for the same rights for other children down the line - unknown to her, but nonetheless, still part of what she envisioned as her larger community.
As for the theatre director, perhaps rather than request that Mason's mother stay on site, she might have chosen to stick around herself, rather than leave kids alone for hours at a time!?!
I am very sad to learn that someone who purports to instruct children - teaching them drama no less, where it is essential to have emotional insight and access to empathy - is not is possession of either. She surely has taught them something. "Is there any cause in nature that makes these hard hearts?"
10
I think the other thing to consider is had this program made accommodations and permitted this child to attend, had something happened to him there would probably be another lawsuit - this time blaming the program for causing his death by not supervising appropriately.
9
This is an inflammatory comment not based in reality. I want my child safe not a punitive payout. Yes, my child has been given nuts in his “nut free” dessert before. No, we did not litigate or threaten the restaurant.
5
My two children have severe food allergies. One to nuts the other to seeds. In his younger years, my husband was allergic to nuts, chicken, fish/seafood, some wheat products, but has outgrown most of them by now.
What I think is strange about this story, is I see fault on both sides.
The theater should have been willing to learn how to use an epipen. Because, just like learning CPR, it might come in handy one day.
But I also think its strange that the child couldn't, by the age of 13 years old, ask what's in the food he's going to eat, and if no one can tell him, smell it first. Ask anyone in my household, peanuts have a smell. And they hate it and will move away from you to avoid the smell. Furthermore, they won't put anything in their mouths that they don't know what's in it. Now, if he was 6 or 7 then I could understand the complaint. But by 13 one knows how to avoid, avoidable contaminations.
My husband can remember the days with no Benadryl, no
Epi-Pens. If he ate a cookie with walnuts, he would try to throw up, calm the inflammation with drinking milk, and ride it out. Really painful and dangerous. But in those days it seemed rare that people had severe reactions to food. Its more common now. And that is my point.
So the theater should prepare itself and learn how to use the epi. AND the young man and family should, by the age of 13, have plans in place to avoid exposure.
But neither could bend, so they went to court over a food allergy.
7
@J
2 things:
1. There’s no “both sides” here. There is only the theater program which lost their law suit twice. Twice they were found to be negligent and broke the law by not following the ADA. That program is on the wrong. Period.
2. It states very clearly at the beginning of the article that this child was 10, not 13, when this happened. It took three years to get to this point. That’s three years of backlash and court battles to fight against a program that couldn’t be bothered to do the minimum legally required. This was a 10 year old child being told that he can’t participate in a program that everyone else can participate in, because the program director refused to follow the law. He was 10.
There is only one question to ask: Did the program do everything it could do to keep a 10yo safe? The answer is no. It didn’t even do the bare minimum of following the law. No two sides about that.
16
If your child had a severe, possibly deadly allergy to peanuts, would you just send him off to his activities hoping he is simply able to avoid them, knowing that there would be no adult around who knew how to use an epi-pen should something happen? Nuts are accidentally ingested all the time by perfectly capable people, including adults, who know what a peanut smells like. It’s like your husband who ate a cookie without looking to see if it had walnuts first! In many cases, all it takes is cross contamination - a minuscule amount that can’t be smelled - to cause a reaction.
11
@GIG
neither side is willing to be reasonable!
where's the responsibility of the child (old enough to choose what to eat!) and the parents?
yes, an epipen should be available, but
no institution can provide for every possibility - especially when the participants don't seem to be willing to accept responsibility for their own well-being, or to take reasonable precautions to manage themselves and their personal needs.
1
I'm grateful that the paper is making so much effort to cross-post articles online in multiple places when they fit two or more subject areas. Such a user-friendly approach!
2
Whilst I admire the parent/child and the other child for taking a stance, these issues can be crippling for those providing such a service for the common good such as this children's Shakespearian company. Where does one draw the line on taking responsibility? Do we demand bus drivers use an Epi-pen? I have huge sympathy for the child but it really is ultimately the responsibility of the parent to ensure he/she sees their illness as life/death and acts accordingly.
Interesting link below to treating nut allergies with probiotics
https://www.healthline.com/health-news/probiotics-help-children-with-peanut-allergies#2
6
@nothingtodeclare yes, actually, schools are required to make accommodations for children with severe allergies so that these children can receive the same access to education as their peers. That includes transportation. It's called a 504 plan and this is codified in U.S. federal law. Children with food allergies are protected in the same way that children with other disabilities are. Sorry if you don't like it, but it's how it is.
These parents ARE being responsible by teaching their child that he should have as normal a life as possible while managing his food allergies. Food allergies are manageable. It's ridiculous that we would expect these parents to not want anything less than a normal life for their child.
9
@nothingtodeclare, if it's something we all would just do anyway, there really would be no need to pass a law. But someone can pressure their way out ofo the pesky obligation of observing, maybe through expensive lawyering or even public shaming, of a law that the legislators voted for like when a person is born with an allergy or an anti-retaliation statute - then really, what will stop another person from lawyering up to claim mixed-race couple or a Jewish family wearing yarmulkes will bother my other customers or that an African-American family will make my other tenants uncomfortable, or that man with tics and tremors will annoy the people sitting at table next to him at my swanky networking event? We'd be in a world where anyone who has the funds to delay and say "sue us" will almost always get their way. (Oh wait, we;'re already in that world, aren't we?)
3
It may not be hard to use an EpiPen and schools may make reasonable accommodations all the time, but schools are structured to do that, with ample staff in place. YSP is not a school, attendance is not mandated by the state, and presumably it has no school nurse. I can understand if Ms. Rubinstein was hesitant to take on the unusual responsibility of dealing with a "life-threatening" medical condition and, in addition to the awesome moral demand, possibly face a lawsuit.
Given the danger to Mason's life, Ms. Rubinstein asked Ms. Wicks-Lim to be present to provide support in case of emergency. What was the outcome of that request? If it would not have been a "reasonable accommodation," why not? If Ms. Wicks-Lim was not herself able to do it, could she perhaps find a substitute? Or did she simply reject the idea?
Having a child "make the call" for whether to file a discrimination complaint, and make a federal case over some issue, strikes me as bizarre.
There has to be more to the story than this.
16
@Mark YSP is a public program and is subject to ADA requirements, as these findings make clear.
8
Not every parent has the ability to attend their child’s or children’s extracurricular activities. Working parents, single parents, parents with multiple kids’ schedules to manage cannot possibly be at every rehearsal or practice. Now add in a chronic health issue. It’s hard understand the time, money, and energy drain that accompanies serious, life threatening allergies (which usually are one of multiple autoimmune diseases allergy kids deal with) are on families until you live that reality yourself. The expenditures in caring for a chronically ill child are staggering. Maybe to you it’s just a couple more hours out of a busy week, but for many parents that’s just one more demand on a precariously balanced life.
Most people don’t have any clue how many times these kids are forced to “opt” out at play groups, athletic events, school outings, restaurants, bookstores, coffee shops, etc. Having a serious food allergy (or any serious medical illness) is extremely isolating and difficult to navigate. It’s an especially heavy burden on little shoulders. Before casting aspersions, try walking in this family’s shoes for a while.
9
My allergist here in Sacramento offers a wildly successful peanut desenzitation program that involves exposure to very gradually increased doses of peanut. t takes time, but it works.
9
I am stunned by the number of comments grudging accommodation to those with allergies. On a recent long-distance flight I watched my seatmate wipe down his seat and all surfaces around him. He said, very straightforwardly, "I'm allergic to nuts." And then the flight attendant came with the tray of nuts. My neighbor declined, citing his allergy. To my astonishment, the attendant then offered a dish of nuts to me. "No, thanks, I'm not up for killing anybody today." Yeah, it was snarky, but it shocked me that airline policy permitted--encouraged?--distribution of a potentially lethal substance in the vicinity of a man who had already declared himself allergic. Of course, he had an EpiPen in his pocket, but why put this man at risk?
25
@Robbie Thank you for looking out for your fellow passenger; a lot of people out there would have taken the nuts without regard for his well-being. It means so much to a person with a severe food allergy when someone acts as you did.
4
@Robbie
Here's a story for you. When my oldest was in preschool (the age where any random item might end up in a child's mouth!) we were told nuts were not allowed due to a classmate's severe allergy. A family was asked to leave when it was discovered that mom was sending in a jelly sandwich with a small circle of peanut butter hidden in the middle, because she couldn't bear to deprive her child of a PBJ and at lunchtime, even if it meant another child might end up in the ER or worse.
Director Suzanne Rubinstein's retaliation toward Sam for writing a letter supporting his friend and his disability in my opinion speaks to her true character . It is clearly more about her ego than anything else . There was no reason to terminate Sam's participation because of the letter even of she did not admit Mason . It was just petty and vindictive . if I were worried about liability I would not have 8-12 year olds left alone for hours on end -sometimes up to a day with 2 teenagers responsible . iI there an adult in the building ? Also glad I do not live in their community . The law is on the mother's side .
25
$2 - that email from Encores' Jack Viertel written to my spouse, not me:
people he was hounding with his emails had once had for him. That’s hardly the same thing as blacklisting, which is a very specific action. This is similar to Fred’s characterizations of my email to you as a diagnosis, or his characterization of my saying I would contact the authorities if he continued to make calls that made Linda feel harassed and threatened as a statement that I was accusing him of threats of violence. When he twists what was actually said into accusations of fraud, illegal blacklisting, violations of the ADA, etc., he makes it impossible to resolve anything.
Ask yourself this simple question: if he were simply reporting what happened to him accurately and asking for help from the people who were in fact responsible, why has he been cut off by every one of them, including attorneys who have a real responsibility to take such complaints seriously? No one will respond to him because it is a lost cause to come to any rational solution. And I promise you that none of the group he seems to believe are interconnected (me, Tom, Jennifer Tepper, Richard Frankel) have the time or the inclination to post things that are libelous or damaging about Fred — we have neither the time nor the inclination.
(on to #3 if allowed)
@Christina, this happens on all levels. I mentioned in a comment below a problem in the theater community. This is a verbatim email sent TO MY SPOUSE, who knows nothing but is a friend of Jack Viertel, the head of Encores for heaven's sake, I guess trying to make my spouse (together since 1989) feel Jack is being reasonable but something about me [stereotyped thinking re my Tourettes is my guess?] makes me unable or willing to communicate. It leaves out that Jack has Jack or Encores/City Center has not addressed anything since August 2013. The 6-year Statue approaches in May 2019, but he writes to my spouse and creates family disharmony as my spouse has no issue or part in this.
From: Jack Viertel
Date: January 18, 2019 at 10:00:57 PM EST
I have no real practical answer, because, as usual, very little of what is pasted below is true, and much of it is apparently intentionally spun in a way that does not remotely reflect what we have or haven’t done.
Just to be clear, this is why I will not communicate with Fred — his willful mischaracterizations of what has been told to him, what has happened and who has been involved make it impossible to carry on a rational conversation. As an example, he puts quotes around Tom’s phrase “long since” and then tries to make the phrase into “long since” blacklisted…
But Tom said nothing of the kind in his email. He said something about Fred’s behavior having long since eroded any good will that the people he was
(see next - #2)
this is #3.of 3 - I'll omit some stuff as too personal
nor the inclination. The truth is, we’re not focussed on Fred. Whatever he’s finding on Google may be real, but I assure you it doesn’t come from anybody I know.
I’ll give one other example and then I’ll quit. When Tom wrote to him, largely to put him on notice that the handle he had attributed to Jennifer Tepper was not a handle she had ever used, he wrote back three emails over the course of a couple of hours. In the first he demanded to know why he had not been told this sooner. By the third, he had decided that Tom was lying and it was Jennifer Tepper’s handle after all, and that tom hadn’t written the email, but a lawyer did. Well, it isn’t Jennifer Tepper’s handle and tom did write the email, but by now that’s kind of beside the point. The point is that there is no rational way to resolve this as long as Fred is unreasoning and convinced of many things that simply aren't factually true.
I’ve never coordinated any action with the folks at 54 Below, with the marketing department at City Center, or with any of the lawyers Fred is continually citing as having been part of the actions that he imagines have been taken against him, and I don’t expect to start.
[removed some stuff here]
I’m sorry to have to make you the conduit for this, and I’ll stop if you would like to call it to a halt, but I will not communicate with Fred — it has long since proven fruitless, alas.
Love,
Jack
[yes, he ended it that way]
As a teacher of 20 years, there is almost always a child with a severe allergy in a classroom these days. I’ve taught 5, 6, and 7 year olds and led them in caring conversation about how to keep our classmates safe. Even the youngest children can understand risks, display empathy, and work together for group and individual good. Not one problem in all my years of teaching! And an epi pin is easy to use- they are made to be so!
22
It's so up to the minute that all of areas like New York are (I feel justifiably morally) up in arms over Mrs. Pence ignoring our LGBTQ rights that have not been passed in that location. But so many of us, many of whom who consider ourselves enlightened and liberal, are here giving passionate, well-reasoned, deeply felt arguments that excuse a business owner from not following laws that are ALREADY PASSED by the legislators. And as I read this thread for the time capsule, every now and then I catch myself before I say "wow, that's a good argument." So my LGBTQ brothers and sisters, can't be sure the fight will be nearly over once any rights are law
I've actually giggled over the gaudy excesses of this Debbie Reynolds "Hammer Song" production number
https://www.youtube.com/watch?v=ng2Ls4OA2k4
but today, MLK Day: I saw the flashy take shown to Pete Seeger on the web, and instead of being aghast, he said "The number has never LOOKED so good!" seeming glad for the exposure the song has in all forms. It made me think again about where Debbie's lyric take, in what we've thought a campy sensibility, winds up at 2:08 -
"Love between all of your brothers, And love between all of your sisters, All over this land."
A Debbie protest moment on MLK Day - today, it means you should never be excluded because you're born that way. That YouTube has a comment "You can't sing a protest song without a fabulous gown, a glamorous wig, and matching heels." Funny, but still...
My cousin has a life threatening peanut allergy. As kids we understood this from a young age. She was taught to be very careful about what she ate. We were taught about the consequences of cross contamination. Everyone managed quite nicely. It puzzles me this has become such a divisive issue.
17
A couple of things struck me about this story. One was the claim--by the theater director, that "that the children in the program — ages 8 to 18 — were often left without adult supervision 'for hours at a time (full days).'" Wow. If the theater director can't, at the very least, make sure children are supervised by an adult, perhaps she needs to close shop (as she threatened). It's also not unreasonable for one or two supervising adults to be trained on how to use an EpiPen. I currently teach--as a volunteer--an elementary school orchestra and two of my students have nut allergies (one to peanuts, one to tree nuts). When we've had class parties, I've made sure all our snacks are nut-free (and ideally free from cross-contamination for my student with the more severe allergy), and the staff who can administer the EpiPen re just down the hall. If they weren't, I'd happily volunteer to be trained to keep my students safe. I'm volunteering to teach the orchestra because these kids love playing their instruments and would lose the opportunity if I wasn't volunteering; I can't imagine letting something as easily handled as a food allergy get in the way of that. It's not hard to train to use an EpiPen. It's not hard to create a nut-free environment. An adult should absolutely always be around to supervise students as young as 8. The long and short of it seems to be that Ms. Wicks-Lim shouldn't direct a theater program when she's not willing to be the adult in the room.
14
to all who posted megative comments, I wish you could live with me and my family for one week... my son has life threatening allergies.. he could die if he were to eat wheat... I mean wheat!! we live with epi pens by our side and he cannot have a normal life like all the other children... and it is heartbreaking
17
@Cristina
How old is your son? I can guarantee you, it gets easier with age.
Two of my children have severe allergies, to nuts and seeds, my son is allergic to wheat too. Both of them have had severe allergic reactions as well. They are now 17 and 13 years old.
Over time it will get better, because they will learn to stop to ask whats in the food, smell it, and if they don't have a clear idea that its safe, they won't eat it.
It will get better. I promise
3
I am no big fan about accommodating everyone in the world with the least imaginable complaint. But as I read this it seems to be about an Eli Pen. The kid comes with an allergy but with his own Epi Pen. Nobody can use an Eli Pen? That's the whole point (sorry) of an Epi Pen. Almost anyone can use it! Talk about divas leading divas. This was clearly about unearned power, not Epi Pens.
25
It seems like what’s needed is a monetary standard for what ADA recommended “reasonable accommodations” can cost - maybe scaled to the size and scope of a program? The question remains: what if a parent is demanding an accommodation outside of what a program can afford?
I understand the aim of pushing this case forward to provide precedent, but I wish the focus was on how to actually accommodate the needs of the child in a program with limited resources, rather than on personalities.
7
@Mtn14 It doesn't seem like it would have cost the program anything to be able to administer an Epi-Pen. I've been trained to do this, it's simpler than signing your own name. The only potential cost to the program would be that the kids involved would actually need to be supervised by an adult, which it sounds like they often were not.
2
I disagree - the added adult supervision would be a significant cost to a small program - particularly when its current model is to allow teens (17-18 from another comment) to be assistant directors - a great exercise in independence but not old enough to be left with the epi pen responsibility
2
This story reads more like a leadership and personalities issue, rather than anything else.
I fail to fully understand the actual precipitating event to this regrettable series of events.
I've worked under a goodly number of Actors' Equity Association contracts. And whenever I'm engaged on a LORT contract, I usually volunteer to be the union rep for the production - a position known as the "deputy". I take it upon myself to assist pros and non-pros alike.
Well over a decade ago, as deputy on a production with a number of children, we had one young cast member with, according to the parents, a profound and robust response to *any* traces of nuts and legumes, particularly peanuts. We took this information seriously and addressed it mindfully. And calmly.
With management leading the way, a class was held in the proper use of an EpiPen and the location of a reserve pen was made known to everyone; all vending machines were emptied, cleaned and unused for the duration; simple instructions were handed out to all workers on the production: no PBJs at home, etc. (watch out for that peanut sauce on your lunch of phad thai, please!) unless you wash thoroughly and change clothes before work.
The kid was great. A fine little actor. The entire production unremarkable with respect to allergies and emergencies. We were prepared.
Any drama was kept onstage at this theater.
16
A sad story, but the original Young Shakespeare Players here in Madison, WI is an extraordinary place, where kids of all ages perform unedited plays of astonishing quality.
6
I live in western Massachusetts 30 minutes from the theater company. I don’t know the Wicks-Lim family.
This ruling will help food allergic kids nationwide be able to safely attend programs and camps that are legally required to provide accomodations.
Twice over a year ago I was able to thankfully reference this case to two very well known summer camp programs in the area that gave strong pushback against my daughter attending because of her food allergies.
One summer camp director initially told me he/she would rather have to close than have my daughter attend. After talking with the director about the theater case, allergies, epipens and accomodations, the director reversed course. This person very sincerely apologized and regretted our initial conversation. My daughter loves the camp.
Another well known large camp I decided against having my daughter attend. The director refused to allow staff to adminster epipens (even while first aid trained) and was not open to a conversation. I spoke with a national food allergy advocacy organization for guidance. I then met with the statewide camp director who resolved this with the camp.
In addition to camps, a few state licensed preschools made it clear they didnt want my daughter to attend. They refused to have a peanut free table, follow her accomodations plan, sweep the floors after eating, said they wanted no more allergic kids... There were also wonderful preschools I spoke with that could easily accomodate her.
9
It's sad that kids have problems that keep them out of some of activities. But that is a fact. If you have a life threatening allergy, to expect that every group is going to be able to protect your child, even when it's a mostly unsupervised activity, is not realistic.
*Life* discriminated against this kid. The director would be massacred in public media, and sued into bankruptcy, if she accepted this kid into the program, knowing he could not be adequately supervised, and he died. This is not a good activity, and yes, it's so sad that this is his reality, but there's a ton of things he can do.
And now - his lifelong ambition has changed, and suddenly he's into something different. We have to accept who we are, what we can do, and what we cannot do. I watch people run and jump, and envy them. But - nothing will make that possible for me, other than joint replacement surgery, and I have plenty else I can do.
29
@SusanStoHelit This type of response is the reason why we need the Americans With Disabilities Act. It’s a perfectly easy accommodation to learn how to use an epi-pen JUST IN CASE. This is a theatre club, not a cooking club, so the chances of actually having to use an epi- pen are actually slim. So no, doing something else is NOT the answer.
23
This is correct in that life does deal many a bad hand and those with that hand have to deal with it. I could make all kinds of statements about compassion and the like but one thing remains true here: this child was not denied because of his allergy “disability” but because of the unwillingness of an adult and group of adults to deal with themselves and their resistance. Proven by the shunning of the whistleblower child.
9
@SusanStoHelit Discrimination is discrimination. Either you roll with it or stand against it. I'm sorry for your personal health struggles, but your comparison of not being able to participate in energetic physical activities is more in line with this child not being able to eat Snickers or PB&J. A nut allergy did not prevent him from acting or staging or directing. Intolerance and a lack of empathy did that.
4
This is absurd. I worked for nearly ten years as a dance teacher on the UES and all of us were taught how to administer Epi-Pens (it's really not that hard) and would carry Epi-Pens for children as young as three and four. Establishing nut-free snacks and lunch is not an unreasonable request and for this "educator" to refuse such an easy request is disgusting. Shame on that entire community for turning on a child.
34
I have followed this story from the beginning. This was not than a theater group trying to accommodate a difficult parent. Two separate legal decisions (one state and one federal) found the program was in violation of the ADA. They also found that the theater group discriminated against a child in retaliation for them expressing their option against the theater group. This failure to follow the law effects all children in that program both present and future, not just this one child.
Before losing these court cases, instead of voluntarily changing the program to comply with the law, the theater group went on a PR run to try and discredit the mother. It was disappointingly effective. The child and mother lost not just the theater program, but the support of many people in the community who didn’t bother to look into the whole situation or read the DOJ decision which was in the Mother’s favor.
As most of us know, seeing published articles or even “opinion” letters that just verify our knee-jerk reactions are very powerful. The backlash to a mother advocating, not just for her own child, but for all disabled children was forceful. She was made a villain for asking a program to comply with the law.
33
Administering an EpiPen is incredibly easy. Every package comes with very clear instructions and a "trainer" device so that you can practice. It takes less than 5 minutes to learn how to use this simple yet necessary device.
There is never any need to discriminate against a person with food allergies. Just don't be a jerk and be aware of the food that is around and take 5 minutes to understand a simple device. I don't have food allergies, but I can read a label (all nutrition labels list the major food allergens clearly if the food product contains them) and I take a moment to care about other people. It isn't that hard and people with food allergies deserve to be treated with respect and human decency.
22
I think this resistance to serious food allergies comes from conflating food preferences with food allergies.
We all know people who use their food preferences as a cudgel of morality, sanctimoniously preaching about the evils of gluten, dairy, meat - whatever the fad of the day. Celiac disease is extremely serious and can cause permanent neurological damage. Gluten intolerance is a self diagnosed condition, gluten free is a choice, but many in these camps will put it on par with Celiac, going so far as to lie to restaurants about an allergy lest they consume the dreaded "toxin". Peanut allergy, shellfish allergy can kill people. A vegetarian will not die should they accidentally consume meat. A vegan won't die should they consume dairy. Religious dietary restrictions aside, most food preferences are choices and yet people are inflict these choices on others as if they were as dire as allergies.
The demands that those with food preferences be catered to by all around them have greatly harmed the perception of actual allergies in the public at large. Fulfilling individual food choices is an individual choice that should not be thrust onto others, either in practice or spirit. Helping to protect individuals with life threatening allergies is the responsibility of us all. So, please folks who don't suffer an actual allergy, pipe down about your special diet and your toxins so we can all make sure these vulnerable people are kept safe.
34
This was a complex issue, but a simple reasoning and clear outcome. The specifics are complex. I’ll try to recap below.
The reasoning was simple: if a program that is required to provide for the welfare of all children refuses to follow the law, they should be forced to comply.
The outcome was simple. Two separate courts found that this program did not comply with their legally mandated responsibility outlined in the ADA, and also practiced discriminatory retaliation against a minor child. The program doubled down on their exclusion, and they were found to be in the wrong. Twice.
Some things not present in this article: the mother was given more then one way to keep her son in the program. However that was only after legal pressure was applied. The director initially said she would not help. When finally given options that would allow her son to stay in the program, they all revolved around the mother doing more than the law said she needed to do. In other words, she was given solutions that would only work in her specific situation, with no changes made for other children who would need accommodation in the future.
17
@GIG Just because "accommodations" were offered, that doesn't mean they were reasonable or achievable. Working parents or parents with multiple kids may not be able to make it to every rehearsal or practice. No one else's parents were made to do so. That's why it was still discrimination.
1
The mother refused to agree to anything less than full compliance with the ADA. She fought for more than her child’s safety. She fought so that other children wouldn’t have to go through this in the future.
She sacrificed a summer program so that this case can help set precedent for future discrimination cases. She did it alone (with her family and one lawyer, but no direct support from her community). She won. She continues to get hateful messages from people who state they support Americans with disabilities, but believed the theater’s negative PR campaign.
This has been a real struggle for real people, and it has had real consequences both positive and negative. Despite the pain of losing friends and community support, more people should be willing to sacrifice a summer privilege to create legal precedents that help those with disabilities for years to come. She could have given in to a solution that would have only effected her son, but she chose to fight for the greater good.
25
Another side of the argument to consider, what do we do when kids that are allergic to everything but peanuts interact? Our son is allergic to 17 different foods including eggs, gluten, dairy, fish, chicken, turkey, sunflower seeds and more. One of the foods our son is not allergic to is peanuts. Thankfully, our son does not have an anaphylactic reaction to any of his foods, but it does cause brain inflammation. The brain inflammation in turn causes apraxia. When his brain infllammation goes down, he is able to speak and understand language. Traveling and camps are a challenge and I dread the no nut rules. We carefully plan his meals ahead of time. Many times our son is starving before we are able to safely feed him because peanuts are one of his few proteins that are safe to eat and satiates him. As a mom on the other side of the spectrum, we need more room to maneuver.
9
I think that people need to learn to compromise and find solutions that work for all. It’s when people think that their own needs trump (no pun intended) those of another that issues arise. This boys needs were legitimate and he could easily have been accommodated. It sounds like an ego generated power struggle was started by the director.
2
@Smith I can relate to what you're saying in that I have a child with some dietary issues and nuts are one of the easier protein-dense foods I can offer. However, it sounds like neither your child or mine have life threatening reactions to the foods they react to. We've had our child in programs with no-nuts policies, and they're certainly been a hassle but we've been more than willing to accommodate the needs of other participants. Generally, I tend to see other families with kids who have food allergies or sensitivities, or restricted diets of any kind, as allies rather than enemies.
3
This piece and many of the comments lack reason and balance. Many comments contain false choices, many suggest that people relegate their own safety and self care to others, and some verge on panic.
We have science, we have medicine, we have reason, we have many options, and we have responsibility for caring ourselves. We also have responsibility for being courteous.
Courtesy is a two way street. It requires that we do not blow smoke in peoples faces and it requires that we walk around people who are smoking on a sidewalk 20 feet from a doorway.
And so with peanuts, I would say that the findings of the American Academy of Allergy, Asthma and Immunology, aaaai.org, should considered. The peer reviewed literature doesn't support banning peanuts and doesn't identify peanuts as a public health issue.
All that said, if I were a school principal I would ban peanuts in school rather than deal with dozens of determined parents.
If I were an airline, I would stop serving peanuts and tell anybody who is afraid of what is in the air on a plane that they should make their own decisions about whether they want to take the risk as they see it.
Science, reason, self care, and balance are needed in this conversation.
17
I would never send my child to an after school program where the director couldn’t manage basic first aid.
22
I must be the only one scratching my head and wondering how a food allergy would impact this child’s participation in a theater group. It’s not a cooking class, there would be little likelihood of this child having to handle more than the occasional snack. Additionally, he seems to be old enough to understand his allergies and self police his food choices. Either the director of this group is massively paranoid, or she’s using this as an excuse to cover her own bigotry.
16
@Amy Raffensperger,
The director was not present at all times. In fact the group was principally “supervised by two teenaged girls, the oldest of which was 17!
Likely this self -interested helicopter mom will cause the group to be shut down.
10
This was a complex issue, but a simple reasoning and clear outcome. The specifics are complex. I’ll try to recap below.
The reasoning was simple: if a program that is required to provide for the welfare of all children refuses to follow the law, they should be forced to comply.
The outcome was simple. Two separate courts found that this program did not comply with their legally mandated responsibility outlined in the ADA, and also practiced discriminatory retaliation against a minor child. The program doubled down on their exclusion, and they were found to be in the wrong. Twice.
Some things not present in this article: the mother was given more then one way to keep her son in the program. However that was only after legal pressure was applied. The director initially said she would not help. When finally given options that would allow her son to stay in the program, they all revolved around the mother doing more than the law said she needed to do. In other words, she was given solutions that would only work in her specific situation, with no changes made for other children who would need accommodation in the future.
7
@cchristian It deserves to be shutdown if the director refuses to comply with the law!
4
Why cannot he carry and use his own epi-pen? He's not an infant. No adult need be involved, and he'll probably know when he needs it before anyone else.
Children of ten are fully capable of assuming this responsibility.
It sounds like all the grown-ups are acting like stubborn children.
12
@Jonathan Katz Anaphylactic reactions happen fast and can be quickly debilitating. Your query is akin to asking why a person can't use a defibrillator on him or herself.
5
How about people refrain from stuffing their face during these activities? Why do these kids need to be snacking while rehearsing Shakespeare? I guarantee that if you stop stuffing you kid with granola bars and goldfish crackers all day they will eat their meals and will no longer need all these snacks.
11
I've encountered parents irate that their kids can't bring peanut butter sandwiches to school because some kid has an allergy... once heard a suggestion that all the peanut-allergic students be sent to their own cafeteria. Some people recoil at the thought of their or their children's "freedom" being impeded at all... even if that freedom, a lousy PB&J, comes at an ultimate threat of life to others... children, even.
11
maybe the parent should stay with the kid so everything is done to her specifications?
7
@M This is only an option for those whose parents can be with them 24/7. Not a realistic option for working parents, single parents, or parents of multiple kids.
1
@MJ are you forgetting that having children is a choice? I'm going to play devil's advocate and ask the question: why does a community have to be responsible for someone's kid?
Furthermore, why should I - or anyone else - have sympathy for some person who chose to reproduce, but can't tend to the child's needs? Why should society bend over backwards for the weak, allergy-ridden members of the herd? Finally, having an allergy is NOT commensurate with having a disability; people with real disabilities don't get to avoid their conditions through their food choices.
3
So the facts are:
- Ms. Rubinstein stated that she would switch to nut-free snacks
- She also stated that she and another staff member would get trained to use an EpiPen
- She asked the mother to be present at all rehearsals because sometimes kids were left on their own
- The mother refused and decided to file complaints against them for not accommodating her son.
This is solely the mother's fault - she should have either agreed to be present after all the changes Ms. Rubinstein was making, or she should have found another program for Mason. No sympathy for her here!
16
@PK
Except those are not the actual facts. 1) The director initially refused to be trained or allow her staff to be trained to use epi pens. 2) The director kicked out another student for justly protesting 3) Both the DOJ and the court said the director was in violation of the law 4) Requesting that the mother attend all rehearsals was an added an unnecessary burden
10
@cookiemonster
There is an inevitable burden. So, after precautions are in place, should the burden fall on the mother and son or on everyone else?
2
@PK If what you're saying is actually fact, why would both the DOJ and MCAD find this program at fault? My read of the article is that you're omitting some important details.
1
Julie writes in response to a suggestion to save a life with an Epipen and a "911" call:
"And wait for 3 years to be served with the lawsuit if things don't go well, then lose everything you have."
Guess it would be better to achieve some internet fame by uploading a video of someone dying from anaphylaxis than trying to help anyone.
God Bless America!
4
Aside from the peanut issue, if I had a child in this program I would be very concerned about two other points raised in the article: 1. The inability of this director to hear anyone else’s concerns or opinions, as evidenced by her insistence that Sam apologize for standing up for Mason or leave, and 2. Her statement that “the children in the program — ages 8 to 18 — were often left without adult supervision “for hours at a time (full days).” What? Wow.
20
“We live in a world in which we need to share responsibility. It’s easy to say ‘It’s not my child, not my community, not my world, not my problem.’ Then there are those who see the need and respond. I consider those people my heroes.”
-Fred Rodgers
13
The problem with this program is the the owner and director, Suzanne Rubinstein. I was in more and more shock as I read that she refused to let her staff learn how to administer an EpiPen (we are not talking rocket science here) which is a skill useful well beyond the program itself, that she was quite content to allow this situation to escalate to the point where it created such alienation within the community, and most of all that she seems to have exhibited absolutely no compassion whatsoever for Mason for a situation entirely beyond his control. And then to allow his mother to be vilified by other parents!! She had the power at every turn to step in and defuse the situation, make perfectly rational accommodations to include Mason and yet she chose not to for reasons that are completely inexplicable.
Who is this person? How sad that this side of her was revealed in such a heart-breaking way at the expense of two children and their families. And what did she gain from it in the end?
Plus, shame on the other parents who supported her, excluded Mason's mother from the listserve, and as Sam said, didn't stand up for Mason's right to be there. One shudders to think how a child with diabetes would be treated. Or some other condition needing special treatment that might put Ms. Rubinstein and her staff out.
And speaking of the staff, where were they in this? Too callous themselves or too afraid to speak out also? Talk about a Potemkin's village!
19
There are two kinds of people in this world: people who respond to a need by asking what they can do to help and people who respond to a need by seeing it as an imposition on them.
20
We should be concentrating on why more and more children seem to be developing food and nut allergies. When I was a child in the 60’s & 70’s kids with nut allergies, or any allergy for that matter were few and far between. Epipens either didn’t exist or were largely unknown, and certainly nuts weren’t banned or even something to we wary of. The only logical conclusion that I’ve come to is that environmental change has brought this about. We need to determine what is causing this spike in allergies and remove the causative factors. BTW, I’m sensitive to this because my grandson has FPIES, which is a scary food induced allergic reaction.
6
I had bad allergies (dust mites and various pollens) early and went through a course of desensitizing injections at age 10 or so. There were always plenty of other kids in the waiting room. This was 1965. My anecdote vs yours.
1
My genuine guess is that people with very severe allergies died.
2
@Julie Zuckman’s
Wrong. The prevalence of allergies has increased exponentially. Two reasons often cried are use of antibacterial soap and avoidance of foods such as peanuts in the early years—a strategy that was previously widely recommended.
2
This story breaks my heart.
I've had to go to the ER with life-threatening anaphylactic shock 4 times because of food allergies.
My heart goes out to Mason.
Be strong.
There are many people who support you.
13
I live in the area near where that happened. My daughter has severe peanuts and tree nut allergies and had experienced difficulties with two other theater programs that have paid adult staff at all times at the kid’s programs. One program said they would close rather than train in epipens. I pressed and explained the law - the director then said they would send the camp teachers to get trained and seemed to sincerely apologize. A second program I talked with the director said she was epipen trained and understood what to do in the case of anaphylaxis. The one time I was going to leave my daughter at the program without me, I informed this director who it turns out forgot how to use an epipen and under what circumstances - I was aghast that she had misled me on a medical issue that can be deadly.
8
I’m sorry your daughter has this problem but I also sympathize with the camp personnel here. I, too, would likely panic and forget how to use an EpiPen in an emergency. I would not want to be responsible for using it or required to take training for it or be liable if something went wrong. This is an excellent example of why these small, low budget programs do end up shutting down.
26
I have had to be CPR certified to work with children in certain settings. That doesn’t seem any less frightening or potentially life threatening for the child than needing an EPI. Yet all sorts of adults get that training and in theory are prepared to use it if necessary. Maybe these tasks are not job requirements that everyone feels comfortable with, but plenty of people can handle it.
22
Hopefully, you don’t work in a position where you are responsible for the well being of minor children. As a parent, I think we can all agree that when we leave our kids in the care of adults, in whatever context (school and/or extracurricular activities) that there are actually adults present, to do their jobs, which include keeping them safe.
11
Such a chilling effect this kind of story has on those who want to provide students with opportunities outside of traditional public school walls.
15
The ADA requires REASONABLE accommodation that doesn’t fundamentally alter a program. I have an anaphylactic food sensitivity myself that has sent me to the ER more than once. I work with students, so have implemented accommodations. I am very sympathetic to families and kids in situations like this. I read a local news piece that said the theater committed to a nut free policy and adult training in using an EpiPen. The mother refused to sign a liability waiver and continued to insist that her child be at all times with a adult who had that training, but also declined to be there herself. The program isn’t set up or staffed for constant adult supervision, which would also contradict its philosophy and purpose. I agree that the director should have been more cooperative and professional in her responses, but I’m not sure the entire accommodation requested and the refusal to sign a waiver were “reasonable.” Guess I’ll have to go read one of the decisions rendered in the case.
74
Noone should ever have to sign a liability waiver for this. You suggest that any parents with a kid with a disorder should sign a liability waiver.
2
@Dean If all parents in the program are asked to sign the same waiver for their children, it's not discriminatory. If the director decides to come up with a waiver for one family, it's easy to see that as an attempt to discourage their participation and to see it as discrimination. Yes, reading the case rulings might be helpful.
I once ran a large children's program that served snacks. A young mother came to enroll her child with a severe peanut allergy and I could tell she was all prepared to have to fight to safely include him. The solution was so simple: I asked her to be in charge of selecting the snacks. Her face lit up and she said "I'll even do the Costco shopping; I know exactly what things are OK." That saved me a monthly shopping trip, so I was pleased, too.
Just meet people halfway. They are almost always glad to travel toward a happy middle ground.
72
I found it interesting that the article did not mention that the theater group settled with the U.S. Department of Justice on this issue in December of 2017 (one year ago). It would be interesting to know why the family pursued further action at the state level. I assume that they found the settlement with DOJ unsatisfactory? Any way, it is a very interesting omission.
26
@Jennifer - Yes, I googled for more info as well, and found a lot of details from other articles that I think are critical to painting a fair, factual context around this story -- but were omitted by this author.
23
A few years ago, I would have jumped on the "unfair!" bandwagon, but after seeing a basketball player with a peanut allergy swell up because a teammate ate a granola bar in the car on the way to a game - I now say that a parent should stay on-site to administer the epi-pen in an uncontrolled environment. If you're not a nurse or doctor, a contact allergy - with no peanuts visible in the vicinity - could be hard to diagnose and the treatment could end up hurting the child.
30
@common sense advocate
About that part concerning parents staying on-site: First, there's no need. Anyone can give an injection under good samaritan laws. No medical diagnosis is required; an unneeded injection will not endanger the recipient. Second, your practical outcome would be to disallow disabled kids from any public setting other than the classroom unless a parent went along. Have you asked any middle school adolescents how they feel about that? Any parents?
15
@SMB - a life-threatening allergy that can be caused just by inhalation of peanut dust or oil, or contact with a bit of residue in an uncontrolled environment should be supervised by a parent or caregiver. I watched the basketball player's mother - a NURSE - struggle with his allergic reaction, tears running down her face. This is not for the untrained.
27
@SMB I’m not prepared to do that. I can see myself getting flustered and flubbing something in an emergency. It doesn’t sound like giving a shot is as easy as all that, either, judging from some of the other comments. I’m sure most kids with a health condition resent it and want to be like the other kids. But, depending on the severity of the condition, that isn’t always possible. There may need to be limitations in place to keep them healthy.
14
This organization is a small non-profit with an unpaid volunteer adult director and teenage helpers. Probably Mason’s mother requested a peanut-free environment and an adult ready to administer epi and first aid before he tried to enroll. The director does not own the theater nor have control of snacks brought in at other times. I am sympathetic that she said she was unable to make this kind of accommodation. Some kids are able to manage their allergies and epi pens themselves. Others are so sensitive that they react to tiny amounts of allergens and require constant supervision. Yes teachers and school district employees are trained to administer epi, but the responsibility and resources of a school are greater than that of a small non-profit such as this.
66
My child did a summer program over ten years ago. It was through a local city operated zoo. In his week there was a child with a severe nut allergy and the parents were alerted ahead of time to pack no nuts in our own child's snack and lunch. Problem solved. Being kind and aware of other peoples children is not hard.
13
@JF
It doesn't take that much training to use an EpiPen. Seriously. You can get certified via the RedCross after taking a 30 minute web course.
Or, if you're not interested in certification, here's how to do it:
1. Pull blue cap straight up.
2. Put orange tip against thigh - no need to remove clothing.
3. Push autoinjector into thigh until it clicks.
4. Hold there while counting to three.
You can do that, I promise. Even if you're panicked. If you're not capable of handling this, you shouldn't be working with kids at all.
12
@JF
Doesn’t matter, it’s legally defined as discrimination.
2
Certainly this is an ethically tough question. If my kid had mortally debilitating allergies, I would enroll him in classes that have the knowledge and capabilities to deal with medical emergencies. Expecting a drama director to suddenly ascend to the role of paramedic seems rather unfair. Perhaps what would have been great, is for the mom to indicate she was willing to sign a waver, freeing the acting groups responsibility in a catastrophic event. This is not about discrimination, it's survival. School is an entirely different avenue where they have trained professionals to aid in case of problems. The court ruling has sent a dreadful message to extracurricular classes with small budgets.
65
@Meena Furthermore, you are required by law to attend school, so there's a significant qualitative difference between schools and other organizations. The school has to deal with the problem.
This is in some ways similar to airlines - Would the child be accepted as an unaccompanied minor? Airlines are moderately good about peanut exposure, but realistically cannot guarantee a peanut free environment - a passenger might bring their own, for instance.
7
@Meena "ascend to the role of paramedic." ? Now that's drama.
3
I was a school child in the sixties. I had a dangerous nut allergy then. I had to fend for myself because such allergies were rare and camp counselors just laughed at me if I asked for a jelly sandwich. It was a joke to my stepfather as well and I suffered severe reactions twice as a result after being forced to eat peanut butter. He is fortunate that I didn't die. I can't imagine what Suzanne Rubinstein's problem is. Parent: "Can you help with the epipen in the unlikely event that it is needed?" Program director: "Of course -- thanks for asking." That comes with the territory in managing a group of someone else's children. She should consider a different line of work if things like this are hard for her.
46
@Owen,
Did you read the full article? The children are left on their own to work on their shows for sometimes hours at a time. Are you saying that Ms. Rubenstein should be forced to restructure the entire program, from the top down, including ensuring that a TRAINED epipen administrator is on-site, every minute of every hour of every day?
35
I guess we read different articles. In the one I read, a concerned parent made a reasonable request of an admired director of a beloved youth program in a rural locale where everyone knows each other -- and considerable conflict ensued. To me that seemed unnecessary. In yours everything is the same, except that perhaps you view the parent's request as unreasonable. I was just going through some old notes from a textbook on conflict and negotiation -- the events in Montague as described in the article, and our different understandings of it, align exactly with the textbooks' observations on how and why such situations can go awry.
5
@Josh Mandel What kind of program leaves children on their own for hours? If that is how the program operates, an allergic reaction to peanuts is just one of many things the adults running the program aren't adequately prepared for.
35
The problem with the program is not that the owner, Suzanne, wouldn’t train an adult supervisor to use an Epi-Pen and be present with Mason at all times during the program. The program obviously doesn’t have enough adult supervisors, period. A parent of a current child in the program even commented to say the assistant directors are all 17 or younger. Having worked in child care and after care programs before, I’m willing to bet that the program is actually breaking the law and could lose any accreditation it has if it becomes known the kids are, to quote Suzanne, “left by themselves for hours”
49
@Leslie Eh. I worked (read: volunteered) at plenty of summer camps and children's museums in high school. A lot of the time, kids end up with high schoolers because the programs don't have enough funding to hire full-time adult workers. And really, it works out fine. The kids would listen better to people closer to their own age than they would to the actual adults, and giving them space to problem-solve on their own can be really rewarding. Considering they have kids from 8-18, I'd imagine adult workers oversaw the younger kids and younger workers the older ones. That's how it always went where I worked.
12
I find it troubling that people with medically documented food or animals allergies over which they have no control can be discriminated against. What’s next— shaming people who wear glasses? Telling people who wear hearing aids to just listen a little harder? And I guess blind people don’t really need a seeing eye dog and people in wheelchairs don’t need those curb cutouts. Everyone has one kind of health issue or another at some point. Instead of bashing the person, it’s better to try to find a solution that all people involved can live with.
24
I wear glasses to read. Should I sue the newspapers for using font smaller than 14 font? I also have allergies, shall I sue the airlines for allowing pollen in the air? Shall I sue the person next to me on the train if they cough? Get real, everyone has issues and institutions would go broke trying to accommodate every one of them. The parent needs to be responsible, not the school
37
@John Palmieri
You're promoting red herrings. You may find the actual language of the ADA a help: A disability is defined as "a physical or mental impairment that substantially limits one or more major life activities of such individual..."
Major life activities are then defined. "(They) include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working...For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions."
Under these legal definitions, having bad eyesight is not a disability. Being legally blind is. Having pollen allergies is not a disability. Having possible circulatory collapse and death from exposure to nut protein is. Having a neighbor cough on you is, surprise, not your disability. If they have an oxygen tank and emphysema, it's theirs.
This is not a question of getting real. It's a question of building as equal access as possible into our society. I have a good friend who's a paraplegic in a wheelchair. You might ask him about what's getting real as he contemplates trying to get into a public building with stairs.
6
@John Palmieri
In your case, I agree.
1
The theater director's position is ridiculous and untenable. As a mom I can't understand why such an accommodating group would allow her to act this way.
And as a public school teacher for many years, I can testify that everyone on our staff easily learned to administer an EpiPen shot--bus drivers, lunch personnel, teachers, etc. It's very simple. You just jam the needle into the thigh, right through the clothes. Most kids can do it themselves, but in the case of a very severe reaction another person might be required to do it. Even another kid can.
Kids with food allergies are not the only ones discriminated against. I have also heard of students with allergies to bee stings and kids with Type 1 diabetes being excluded from activities if their parents could not attend with them.
46
As others have commented, there was not always an adult present when the kids were working on a play. I don’t see why the theater program should be expected to provide full time adult coverage for one kid with an allergy if that adult presence was not otherwise needed. Remember this is an after school program, not public school. I do find it a bit strange that there were times when no one over high school age was present with groups of teens and tweens. That seems risky to me as a parent and as a former teacher.
18
The key, it seems to me, is "reasonable accommodation." In this case it seems the child's allergy could have been "accommodated" - it wasn't a lunch program, after all. where a good portion of the children may bring their PB&J sandwiches. However, there's a downside - many parents of nut-allergic children (parents who may have been unwittingly responsible for the problem) are wildly militant to the point of being vicious. Such parents need to calm down and reconsider their own behavior.
37
My daughter has 8 severe food allergies including egg. Our house is her only allergy safe free zone. Anyone who stays at our house we ask to not bring these foods inside. My brother-in-law called me militant in this, and when staying with us with his family, purposively took inside baked goods made with egg as vengeance and ate them in front of me. He is no longer welcome in our house. A crumb of food can be deadly to some people. I’m allergic to fish and kiwi, and an exposure to kiwi I felt like a knife was being stabbed in my throat and I was going to die.
10
Imaging telling a parent whose child just dies of an avoidable peanut exposure to “calm down”.
6
@Tim
Please elaborate how this allergy may be the “unwitting fault” of the parents.
5
This is ridiculous. When I first joined the Army, I met a Soldier on a field problem who had an epipen in case she was stung by a bee. It took her less than two minutes to show me how to use the pen and what symptoms I would expect to see so I could help her in case she was stung. It's not hard.
All this drama because some middle-aged tinpot Hitler couldn't take two seconds to learn how to use something even children can figure out. She must be the center of mirth at parties.
48
Here's a thought: Can the child administer the Epi-Pen himself if something happens? If the program folks have concerns, it's best that the young person assist himself and really don't have to depend on others to do what is pretty much necessary to save his life. Something one must do for yourself here.
9
Yes, they usually can. If a reaction is particularly severe, the person can be out of commission before they have time to do it. Those cases require help from a bystander.
20
@Welcome to Roots
It depends on how rapid and severe the reaction is, as a little thought could tell you. Happily, Epipens are really easy to use.
4
The use of allergies as a form of Munchausen by proxy was identified in 1984. Read about it at the NIH Library of medicine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1628464/
I quote from the abstract:
"The maternal obsession with allergen avoidance resulted in bizarre diets and life styles. Most mothers were articulate and middle class, and many had marital problems (three single parents). They had a limpet-like attachment to their child and insisted on many medical consultations"
16
@Dan M A 35 year old study that identified 17 kids with an allergic version of Munchausen ‘s by proxy and states that most parents in the study readily accepted data that showed their child did not have allergies is not relevant to this story. There’s no reason presented in this article to make us think this family was faking their son’s allergy. Munchausen by proxy is rare and Munchausen by proxy involving allergies is rarer still. Unfortunately, serious allergies are real and a lot more common than Munchausen. It’s unfortunate that just because some people lie about allergies or mistakenly think that they have allergies that many in the general public think that serious allergies are not real.
12
And autism and schizophrenia used to be blamed on mothers too.
5
Sounds like those kids had intolerances, the moms were frustrated and that doctor hated women.
3
Disease du jour: peanut allergy, etc. Food allergies are actually rare, but not anymore! Especially now that an Epi-Pen is comparatively cheap. I'm looking forward to the day when this bit of hysteria passes and these kids have magically "outgrown" their allergies. It's kind of a Munchausen Syndrome by Proxy thing, all those fretting, bossy mothers who get to order an entire school, airline, etc. to ban all peanuts.
20
@debra you're suggesting food allergies are purely psychological? You understand that allergies are a property of a person's immune system and that there are blood tests, etc. for this stuff?
49
@debra
I was born in 1957. I was raised in Va in a low income household. I ate all the leftovers from other elementary students and never turned down any food. In 1994 at the age of 37 I developed allergies to various fruits. There is nothing du jour when my throat starts swelling shut.
44
@debra - The stakes are very high when it comes to food allergies. We have a family friend whose daughter died after exposure to clam sauce that she was allergic to. And be careful about sharing your viewpoint. A teacher I know of was removed from her classroom for not taking allergies seriously.
18
Note to theatre programs: have an admissions program so you don’t get sued by the rare student you don’t wish to include.
17
@Ellen What would that admissions program look like? Is this story really an admonition for how to avoid being "harassed" by groups that protect people's rights? How about an admissions program where all but those whose names start with vowels are welcome?
1
Echos from history..... “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.”
4
This is hilarious. It reads like a parody of liberals.
The allergic kid, the trans kid, the silly director who will
"brook no criticism". Who does she think she is? The only person I can think of who could get away with that line is Maggie Smith.
But seriously, how hard is it to go without nuts for a few hours at a time? My kid isn't allergic, but I would still never send anything with nuts to school. I wouldn't ever want to know that I had inadvertently caused the death of a child.
Their parents are genuinely terrified, who wouldn't be if it were your kid who could be felled by someone else's PB&J.
Talk to a lawyer, see what the law requires, and deal with it. I mean, it isn't as if the ADA became law yesterday. If you had a kid in a wheelchair, would you refuse to build a ramp?
46
@EK To hear a lot of people talk, the ADA did become law yesterday and it's utterly unreasonable for anybody to expect it to ever be enforced.
2
This sounds familiar. In the small village I live in, where people consider themselves tolerant, they instigated a campaign to force my brother and I out of the municipal pool. My brother is autistic but loves to swim laps. It was subtle at first. In the end, no one in the village would stand up for us or for him. their sole concern was staying on the good side of the rec director who didn't care about anyone breaking the rules as long as their last name wasn't ours.
When we complained about the arbitrary rules we were told that everyone was being treated equally and that if we didn't like it we could leave. We had to threaten to sue the village, with the help of another organization, before they decided that the ensuing publicity and costs of a trial weren't worth it. We asked for a cost free accommodation but what we got instead was lies, silence, and a complete unwillingness (particularly on the part of the most educated members of the village) to do anything that might be the decent thing to do.
There is no reason why Mason could not have been part of the group. It doesn't sound as if his allergy was so severe that he was in imminent danger of having a reaction. The overreaction was on the part of the theater group director. But this is what Americans do: exclude all but the "normal" people because being different is troublesome and not worth dealing with to most of them.
23
@hen3ry
Unfortunately, this exclusion of the "different" is a world-wide phenomenon. The sad fact is that we here in America thought we were somehow more advanced than the rest of the world, more tolerant, more generous, more helpful to those in need. Turns out we were wrong.
14
If the mother couldn't/didn't want to attend the acting classes, pen why didn't she designate a representative with the injection device to sit in the rehearsal room with the child? Probably the director would have approved that solution because there would have been no liability on the theater.
17
@Caroline Ironically, the director's actions here seem to have been the biggest liability for the program.
Life threatening allergies known as anaphylaxis are rare. Unfortunately every parent whose kid had a rash thinks their child is in constant mortal danger. Add to that all the parents that have a penchant for attention and we find ourselves in court. 90% of the epipen prescriptions are unnecessary and simply a way to keep parents from becoming more neurotic than they already are. It has become like prescribing antibiotics for colds. Even more to the point, the latest, greatest prescription for peanut allergies is.... wait for it..... an expensive pill with....PEANUTS!
15
@Ed
Could you point me to the research that proves 90 percent of epipens are unnecessary? Do you mean because they never have to be used- thank goodness, or allergies are a figment of dimes imagination?
Regardless, I want a copy of the research when I complain about peanuts not being offered on a flight.
6
@Ed - The problem is that every exposure can result in a greater reaction. So you never know if a rash and wheezing one time can turn into trouble breathing the next time. As to the protocols you mention with controlled exposures, they have to be done in hospital settings because there have been life-threatening reactions.
10
@Ed can you cite your sources for this gobledygook “data” that you just provided? Desensitization isn’t as simple as taking a pill. It takes 8-10 months, isn’t covered by insurance, and costs thousands of dollars (in some cases $10,000). Also, 1 in 13 children has a food allergy. So it’s not just made up. Do you have kids Ed? I’d imagine that if you do, and you ever had the pleasure of watching their lips swell after eating a candy bar and been unable to breathe, and you’d sure as sugar keep a epi pen in your pocket every day after that.
2
@WHM The still-experimental desensitization to peanuts is only meant to protect from accidental exposure to the equivalent of half a peanut, e.g., the amount of exposure from peanut traces on hands, or using the same spatula for peanut butter cookies and cookies said to be peanut-free.
Its other limits include scarcity (very,very allergists are trained in this), not risk-free (anaphylactic shock is a real possibility during each exposure) and costly. But very promising.
5
My child is currently in this program. They have two assistant directors, the oldest of whom is seventeen, who have been in this theater program since they were little children, having acted in more than a dozen productions of Shakespeare. They are responsible, amazingly talented young people with a high level of maturity, but that does not mean they should be saddled with the additional responsibility of having to deal with a child's severe allergy; I don't know but it might not even be legal to ask a minor to be responsible in that way. Suzanne the director cannot be everywhere at once and sometimes the children are rehearsing different scenes in different parts of the theater. The theater has plays and music performances going on at night that are unconnected to the Shakespeare program, so there is no way Suzanne could ensure that the premises are safe for this child. I think Suzanne is doing a terrific job and I feel entirely safe leaving my child there. But if my child had a severe allergy, I would seek another program where an adult was always right there. A big emphasis of the program is empowering children, and it really does that as evidenced by the competency of the assistant directors. I think they're doing an extraordinary job, but, as Suzanne says, the program is not for everyone, in part because of the degree of responsibility delegated to the assistant directors, and the self-management skills that are expected of the young actors themselves.
83
@Jamie If Suzanne is the only adult, can't she carry a phone or walkie talkie to be summoned in case of a real emergency? What would these teens do if a kid fell and sustained an injury? There must be some sort of plan in place for accidents — right? If so, how would an allergic reaction be any different?
31
@Navah Yeah, Suzanne has a cell phone and I believe the assistant directors have cell phones, and some of the actors have cell phones. So, in a real emergency, any number of people could call 911. But, correct me if I’m wrong, my impression is that someone can die very quickly if they have a severe allergic reaction. Maybe before an ambulance could arrive.
16
@Jamie Yes, this is why Epipens exist, to stabilize somebody between the reaction and the ambulance arrival. A five year old could learn how to inject one. If the whole purpose of this program is independence then the kids should certainly be taught how to do this.
10
It is a difficult call. If children are primarily supervised by older teens, then parents must assume some responsibility for taking the risk of non-adult supervision. Our daughters went to a summer cam with teen supervisors. Kids with allergies or other special needs had to stay on a cabin with adult supervisors. Some parents objected to this as a stigma but at some point you have to accept that special needs require special accommodations. I say this as a parent of a son with autism.
Recently, there was a huge protest by parents of children with nut allergies at an elementary school: the Friday movie night featured Peter Rabbit, and the parents were upset that the film ignored food allergy issues. The school apologized for not having greater sensitivity to the allergy issue. I think the school was wrong. Sometimes, the ....not sure what word to use... exuberance of parents can be idiotic. In this instance, the mother should have either taught her son to use an EpiPen, or found a school with constnt adult supervision.
21
@Tom,SF:the children's film you mentioned,Peter Rabbit, actually showed a bunch of characters *murdering* another character by forcing food down his throat to which he was known to have a fatal allergy. The tone was triumphant.
This is a concern for a very good reason. There are increasing reports of "allergy bullying", that is, threatening a child with a known, serious allergy that they would force the allergic child to eat that food; throwing that food at the child or rubbing it on their skin; and sometimes carrying out the force feeding threat.
Many people with very severe allergies have a reaction to having it touch their skin, but apart from the medical risk, no human can feel at ease knowing that peers might think it funny to deliberately force on them a good which they spend their life trying to avoid.
Your mis-characterization of the objections as being due to insufficient sensitivity shows you really don't get this: an otherwise healthy human dying over the course of a few minutes due to a knuckleheaded "prank,".
26
@Diana:
The … overexuberance noted of other parents on this thread is unfortunately present in your comment.
You write that the film "actually showed a bunch of characters *murdering* another character by forcing food down his throat to which he was known to have a fatal allergy."
No, he was not "murdered," which would be a very odd plot development in a children's film. He survived.
And the food was not "forced down his throat." It was sling-shotted into his mouth.
There's still plenty of wrong in that scene, but hyperbole doesn't serve you here.
https://www.newyorker.com/culture/culture-desk/the-real-problem-with-peter-rabbit-s-allergy-scene
Wow, this sounds like a mess that was completely unnecessary. I think there is a vague perception among some that parents create these allergies and that they are somehow not really serious. My grandson has a serious egg allergy and would be life-threatening if not immediately addressed. It is very simple to jab somebody with an epi-pen. This was so avoidable.
19
You actually cant sign away the right to sue if someone dies.
And if we can teach chikdren to call 911, perfoem the heimlich maneuver and CPR, not to mention DRIVE A CAR, jamming an Epipen in a thigh and pressing a button is an entirely reasonable request.
And finally no kids with Diabetes aren’t smarter. Or dummer. They have a different condition that requires different management and treatment in the case of an adverse event.
5
@White Wolf
Diabetic kids don't usually jab themselves while they're entering a diabetic coma.
1
@White Wolf No, diabetics are not more intelligent than those with anaphylaxis. However, diabetics may have rare occurrences where they are incapacitated due to their glucose levels. During these times they may not be able to take the appropriate action to manage their condition whether it’s an injection of insulin or finding a candy bar (hard to do if you fainted or are in a coma). Similarly, someone in the middle of an anaphylactic reaction might not always be able to inject him or herself.
2
I was an after school teacher and learned how to use an epi pen in basic first aid training. It's extremely simple. If you don't want to be responsible for the physical well-being of kids in your care, don't run a program for kids.
61
@Navah: Good job. Absolutely right.
3
My daughter has a severe peanut allergy. Many years ago, when we moved to Seattle and joined a Waldorf school kindergarten, we talked at length to the teachers and other parents and together we were able to create a peanut-free environment for our daughter. It took time but was not difficult because the teachers and parents WANTED the school to be a safe environment for her. In fact she thrived, and the parents learned quickly how to make almond butter and jelly sandwiches instead of P&Js. The teachers willingly accepted training on how to inject an EpiPin, which isn’t difficult. We advised on field trips and school events - how best to bring food and snacks without peanuts. Again, not that difficult. She went to Waldorf for nine years and had a wonderful experience; her Waldorf friends and teachers are many of the people she is closest to.
It sounds to me like Ms. Rubinstein predetermined what she would do and how she would act. This is sad, because it’s shows an unwillingness for her to learn just how easy and positive it is to understand and help someone with a food allergy. This would have strengthened the community and the lives of families both with and without such allergies, and would have paved the way for a much better outcome than the one she created.
35
@tg Maybe she just didn't want the responsibility that the parents themselves would not take. They refused to be at rehearsals to ensure their kid's safety.
25
@expat Do you really think a parent should have to be present throughout all rehearsals (which are likely after school when parents are working)?
10
@tg: So because your kid has an allergy every other kid must live a life without the substance your kid is allergic to, right? Unfair. Teach her to stay away from nuts. Be there all the time in case she disobeys. She’s yours, not mine. My kid would bring what I make for lunch, PB&J.
My brother (now 75) was so allergic to growing things he would have a reaction to milk, in the spring. Cows ate the new grass. Bad for him (he adored milk). But, all milk didn’t have to be banned from the universe every spring. He had to be mature (from kindergarten) enough to stay away from it, & the new grass in the playground. Eventually, most of his allergies (if it lived it turned him into a giant rash, for which then there was no treatment, plus wool) lessened. How? After college he moved to NYC, stayed away from the parks & lived allergy free. Today parents would demand every plant be murdered. The minority cannot be allowed to override the majority. Some accommodation can be made, but, not at the cost of making non allergic kids life as if they have the same allergies. Kids who are severely allergic MUST learn at a very early age to deal with it. Or it can kill them. I know someone allergic to bees. Took an outside job. He did carry an epi pen, but, always left it in the company truck. If he got stung he would have died. His parents would have sued. Because their adult son wouldn’t take care of himself. Self reliance when you have any disability must be taught very early.
27
This comment will be wildly offensive to many people, but seemed worth asking. I agree that Sam should be not only be allowed, but encouraged to participate. Legal or emotional concerns of others are a silly consideration, and anyone can operate an epipen. However, I also wonder if it is worth considering that new controlled peanut exposure therapies seem to work and that Sam would be better in the long run if his allergy could be eliminated. These treatments require the careful attention of an allergist, and may be rejected out of fear by some people. Also, they may cost a lot, but that is what fund me sites are for. Clearly one cannot demand that Sam's family go this route, but if treatment could become a community project that might be good.
1
@WHM That treatment is still being researched and is only for peanut allergies, not tree nut allergies (many kids suffer from both)
7
@Katie: Then total quarantine until the treatment has been around for 100 years & one found, researched & used for tree nut allergies too.
@WHM Sam isn't the one with the allergy, Mason is.
2
Missing from this story is a discussion of how liability plays into this situation. I don't see how the theatre owner should be forced to accept liability if her staff improperly administered the EpiPen or otherwise messed up in attending to this child. A dead child is not worth the risk of a lawsuit for declining him. I don't blame her for not wanting to accept an entirely new set of responsibilities of training her staff to deal with medical emergencies, briefing and reminding everyone who entered the theater to not touch or eat nuts before arriving. It is a lot of stress and responsibility for someone who I am sure already has enough going on running this program and its productions. I am left wondering whether this mother, who was not willing to be present with her child, would be willing to sign a full release of liability to enable him to participate. It does seem that she is shirking responsibility and putting his welfare wholly on someone else's unwilling shoulders.
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@Julie
Maybe. But throwing the other child out of the program was uncalled for.
12
@Julie Obviously, you, and no one you love, have a peanut allergy. This problem has a simple solution: serve pretzels for God's sake. Or apples. Or bananas.
4
Wouldn't that be true of anything, though, not just food allergies? When you're working with kids (or in fact anyone) there is always a risk of something going catastrophically wrong. If the program was willing to accept the risk of a kid getting beaned by falling scenery and suffering a head injury and dying, or of falling and cutting themselves, how is that any different than accepting the risk of taking on a child with a food allergy? Presumably they have liability insurance to handle these situations, and they take reasonable precautions to avoid them wherever possible, and any youth program with liability insurance will be required to have someone on hand who is first aid and CPR trained (and thus Epi-pen trained; it really is stupidly easy to use one. The instructions are printed on the device itself). If they have these things in place, taking on a kid with a food allergy should be no problem, and if they DON'T have these things in place, then why would any sane person leave their child unattended there at all?
13
It is sad to imagine how lonely and unloved people must feel that they so resent even simple but necessary accommodations made for anyone. Why do they deserve special consideration when I get none?
For most children, this is a non-issue. Children often find satisfaction in being helpful to others. I guess life's many disappointments and setbacks can really take a toll.
16
My daughter, who is severely allergic to peanuts, shared her experiences and fears at a middle school assembly. Classmates scoffed and asked "does she expect this to be treated as a disability?" For years, faculty allowed student council candidates to promise a return of peanut butter jars to the lunchroom (the school had only recently gone "nut free"). The sense of isolation can be devastating. We need far more understanding and education.
24
My 16 year old son has nut allergies, he had many episodes of an anaphylactic attack. I completely understand the frustration this caused Mason's family. It would have been reasonable for YSP East to accomodate a request to train staff on how to use an EpiPen. Cheers to Sam for standing up for a cause that he believed in.
23
@Tony Palackal
You, obviously couldn’t read the part where the eldest “supervisor” who was present all the time was a 17 y/o girl.
Why would it be a hardship to train a staff member or two on EpiPen injections and to have adults present with children at all times? Both would seem common sense, and are done across the country by schools and after-school programs all the time with very little fuss involved.
22
@Mike McGuire Most of the staff members are high-schoolers, which is often the case for small non-profit after-school programs. It can be incredibly difficult to have an adult present at all times, due to adults usually having jobs and more important things to do with their time. Schools have more funding and access to resources, and the ability to actually pay adult workers and nurses for their time. In addition, the program emphasizes self-reliance and independence among its actors, so they are left to work out their lines and rehearsals on their own. This is also pretty common for small non-profits, or even summer camps.
5
I find it awfully hard to understand how it was not possible to see that someone was trained to administer an EpiPen injection. Really...just how hard is that? And that Ms. Rubinstein should take the issue so far as to actually threaten to shut down the program seems to defy reason I can't help suspecting that there's something more going on with her that we don't know about. Given the principles that the program is supposed to be run on, there's no was Mason should have been excluded.
22
@Stephen Meyer: & programs run on shoestrings, are shut down everyday because of situations like this. Everyone loses, because parents forget THEIR responsibility is 24/7/365, not the programs.
13
@Stephen Meyer Administration of epinephrine is covered by the Good Samaritan law. There is no liability if it does not work. The same law applies to using an automated external defibrillator. They are now in most public places and schools, and anyone can use it and not be subject to a law suit if ineffective or incorrectly used.
21
@Stephen Meyer probably not. Massachusetts law according to a quick google search: “[a]ny person who, in good faith, attempts to render emergency care . . . and does so without compensation, shall not be liable for acts or omissions, other than gross negligence or willful or wanton misconduct, resulting from the attempt to render such emergency care.”
2
This could have all been avoided if either the theater troupe had allowed Mason's mom to volunteer on site so she'd be ready to deliver an Epi pen shot, or for a staff member to go through basic training in emergency treatment (which every group dealing with students/children should have.) Seems like a small concession to a kid with a nut allergy.
However - I also agree that the ADA has tipped the balance to the over-accommodation of people with disabilities - real and imagined. That's why we have peacocks getting on airplanes and the wacky era of "emotional support animals" (formerly known as "pets".)
The world is tough for anyone on any given day, and if you have a real disability, you should have the right to try and find your spots and live as normal a life as possible. But they also should have the rational common sense to understand when something is realistically beyond the scope of their abilities. Sometimes, living a full life as a disabled person means accepting not only what you can but cannot do. The ADA - out of fear of litigious opportunistic people - has tipped the balance way too far to the extreme - given time, anyone with a pimple will be able to have an ADA disability label to wield like a cudgel.
22
@Cgriff
I'm a working adult with allergies to perfume, aftershave and scented products. Despite signs in the ladies' room requesting no scented products, including hand creams, hairspray, perfume, etc., a few times a month someone decides that doesn't apply to her hand cream, hairspray and/or perfume.
I get a migraine that lasts several days just from taking one step into the area. Others on the floor are sensitive too.
Others treat this as something that places a burden on them, not being able to use scented products.
So is not being able to use the ladies' room something I have to live with?
12
@Kate I don't think it's asking too much of people to accommodate your allergy. That said, you can't really expect 100 percent compliance. It's awful for you to suffer a migraine, but other people just don't get it. I don't have a left hand and I have found that none of the ADA regulations take me into consideration. I don't expect to be accommodated - it's a waste of time and energy for me to insist that others understand my experience, so I do what I do and make things work for myself. If I had a child with a disability like mine I would expect them to be treated with respect, but I would teach them to adapt. If I had a child with a fatal allergy, I would never ask someone else to be responsible for them.
10
@Cgriff writes: "That's why we have peacocks getting on airplanes ..."
Actually, as I recall, the peacock was NOT allowed on the plane.
3
Hooray for Sam. And how sad that 12-year-olds have more common sense than most of the adults running this world
29
The ADA is a good example of a well intentioned law that in its interpretation by the courts and its consequent implementation has gone awry. The law has created a huge community of protected individuals and groups, some on a rational basis and others totally wacko. There is a limit to what extent society can do to protect those with real or imagined disabilities. Should we, for example, require that everyone boarding a plane or attending an indoor event undergo complete decontamination and clothing change because a molecule of a certain food or an odor might be dangerous to an individual?
16
@Jake In fact, some airlines do ban snacks containing peanuts, because some people have allergies to airborne particles, rather than contact allergies. And those allergies can be just as deadly as the contact allergies.
Surely you can't equate an emotional support peacock to a life-threatening nut allergy?
20
@Andrew Smith, some airlines do not serve peanut-containing snacks, but I have never heard of one that searched passengers and their carry-ons to ensure that a passenger didn't bring anything containing peanuts on board.
6
@Andrew Smith Right, but what if that person is seated next to someone who just finished a PBJ sandwich or has brought on their own snacks that include trail mix with nuts? Let's not forget that any concern from the airline is all about liability -- not ensuring that the allergic person is safe. That always (as it should IMO) fall on the individual.
4
In case you find yourself witnessing someone who you think is having a severe allergic reaction, stay calm and do the following:
Call 911. Time is of the essence.
Ask the person if they think they are having an allergic reaction. Itchy throat, swelling of lips and difficulty breathing are the signs. If their airway swells enough, they will begin to turn blue.
If yes, try to locate their Epi Pen or the newer Auvi-q for them. The pens are long, bulky and can come in a 2 pack. The Auvi-q's are rectangular and about the size of a men's wallet.
Let them use it.
Pat yourself on the back. You just saved a life.
31
@Kitty First: locate the EpiPen and use it. Second: Call 911. Time is of the essence during allergic reactions and everyone cannot talk during an attack to answer questions. They also may not be able to use the pen and need assistance.
10
@Kitty And wait for 3 years to be served with the lawsuit if things don't go well, then lose everything you have.
5
@Julie Anyone using an epi pen or AED (automated external defibrillator) is covered by the Good Samaritan protections.
16
I think the reason this is such a hot button issue is that it really divides people into two camps. On one side are people who believe that the problems of the few ethically require the many to change their practices to accommodate them. On the other side are people who believe that the burden resides with the person who can't fit into the existing structure to find a way to make it work with out disrupting everyone else. Each side thinks that their position is the obvious one, with the higher moral case to be made for it. Throw in sick children and a litigious society, and its bound to blow up.
32
@Molly B. The law though, requires something in between- reasonable accommodation. In this case, it would appear, the theater director was not willing to do that.
20
@Jack
If the theater director had forbade the mother or her designated representative to sit in the rehearsal room with the child, then we could say that she, the director, was unwilling.
5
@Caroline What makes it discrimination is first refusing admittance and then only allowing for provisional admittance. It's discrimination because the rules for the child in question were not evenly applied to all the kids.
Organizations like this should make reasonable accommodations for people with allergies. Have the person sign something to reduce/absolve them of liability and then just get on with it. If something happens, it's sad but it's not your fault. People can't be responsible for everyone else's issues, after a certain point. The problem is the litigious society we live in. Organizations are afraid of being sued out of existence if someone gets an allergic attack on their premises.
9
@MarkKA Those waivers have very, very little power and when they are used, generally stand-in as a tool to convince parents not to sue. A parent can't actually sign away a child's rights with those things. They aren't even notarized! My mom's a lawyer, and she'd laugh out loud when we presented her with field trip waivers.
As with most other commentators, I agree that this is blatant discrimination.
However, I was struck also by the fact that the children "were often left without adult supervision"for hours at a time (full day)."
As a parent, I would not have ever been comfortable leaving my child in this situation. Did this not prompt any concern from the other parents? Did they know?
If Ms. Rubenstein was concerned about liability in the case of Mason, I would think she should have been terrified about having children left by themselves for long periods of time in her program.
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@Trixie in the Heart of Dixie
My child is currently in this program. They have two assistant directors, the oldest of whom is seventeen, who have been in this theater program since they were little children, having acted in more than a dozen productions of Shakespeare. They are responsible, amazingly talented young people with a high level of maturity, but that does not mean they should be saddled with the additional responsibility of having to deal with a child's severe allergy; I don't know but it might not even be legal to ask a minor to be responsible in that way. Suzanne the director cannot be everywhere at once and sometimes the children are rehearsing different scenes in different parts of the theater. I think Suzanne is doing a terrific job and I feel entirely safe leaving my child in the care of the others there. But if my child had a severe allergy, I would seek another program where an adult was always right there. A big emphasis of the program is empowering children and it really does that as evidenced by the competency of the assistant directors. I think they're doing an extraordinary job and hope my child will participate in future productions. But, as Suzanne says, it is not for everyone because of the amount of responsibility delegated to the assistant directors and to the actors themselves.
38
My children are severely allergic to walnuts and pecans, but that has not stopped them from living a normal life. They both have epi pens. In general, one has up to 20 minutes after ingestion/contact and reaction to administer the epi-pen. It is not hard to administer. I think a middle road might have been found here. But the program director seems particularly intransigent when it comes to accommodation. A bit of compassion would have gone a long way.
31
@Jackie Kim Hiya Jackie, just wanted to add that reactions times and severities are highly variable. Always best policy to treat an exposure like it's a code red rather than a code wait and see. Once a reaction is under way, it's really difficult to turn it back around.
1
A ten year old should be able to use an Epi-Pen. Both my kids were diagnosed as nut allergic at the tween age and they were trained in the ER as to what to do. This isn't rocket science and they usually include a "trainer" injector with the real pens. Does Ms. Rubinstein also keep diabetic kids out of the program? They, too, could possibly need an injection at some point if they are in a health crisis.
Yeah, it can require a re-think if your child loves that pbj daily but if you explain that the pbj could make another child deathly ill, most kids will be fine with change to accommodate. It is usually the PARENTS that have the issues.
Lastly, is Ms. Rubinstein a spokesperson for JiF or something? Her response is so controlling and seems way out of line with the supposed inclusion of the program
41
@MomT
AN injection, for a diabetic? Not. Sugar under the tongue or liquid glucose. Most do not walk around with glucagon.
@The East Wind
If the child gets into trouble from too much sugar, they need an insulin injection, not more sugar. The symptoms of hyper and hypo glycemia are different and the diabetic can recognize those differences.
7
@MomT Hi there! I completely agree that a 10 year old should be able to use their own Epi-Pen. When I was in third grade we had so many kids who had bee sting allergies that a bunch of us were trained how to administer epi-pens at 8 years old - it's not that hard.
However, sometimes when you're having a severe allergic reaction you lose consciousness or your airway is cut off and you have trouble with it. It's always good to make sure someone around you knows how to use an epi-pen and knows where you keep yours.
13
To this day, my now 38 year old son could die if even a trace of dairy crosses his lips. When he was young allergies like this were unheard of. We had to educate friends, institutions and anywhere we ate how important it was to avoid dairy in his food. I will forever be grateful to the mom who made her 4 year old son’s birthday party completely dairy free! To Greenwood’s Camp, in Michigan, who sent me the meal plan in April so I could spend the next few months before camp cooking and freezing non-dairy versions of his meals, thank you!
Today we are so much more aware of severe allergic reactions. There are well labeled allergy free products on every grocers shelf. An epipen is an easy injection to learn to use, my son could do it himself by age 7. The only reason to reject a child from a program due to allergies is that they are in a remote location where an emergency room is too far away. After an epipen is administered you still need to visit the emergency room as a delayed reaction to the allergen remains possible. To reject a child because he needs an epipen, along with the honorable child who stood up for him, is disgusting. This is blatant discrimination and ignorance. I hope another inclusive program emerges where both these children can participate and shine so they can pursue their passion in a welcoming environment. They will be ready for college by the time the lawsuit is resolved.
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@Stefanie
Why weren't there all these kids and adults having these awful, life threatening reactions, right there, in the school, in the airplane, in the mall, in the restaurant, all those years ago? Before Epi-Pen and allergy "testing".
What a tempest in a teacup. Any fool can administer an Epi-pen injection. That's why they're so expensive! They're designed to be fool-proof! A bottle of epinephrine and a syringe would cost pennies by comparison, but would require (slightly) more skill to administer.
THE TRAINING IS RIGHT ON THE BOX!
51
@Jim I agree that using an Epi Pen is simple, but the only reason they are so expensive is obscene greed on the part of the manufacturer. Most kids with severe allergies allergies need one for home and one for school. Well over $1,000 and need to be replaced every couple of years when they expire.
Behind every food allergy drama seems to be a parent that is overexaggerating their child's condition along with another adult who doesn't understand food allergies. I'm guessing the mother in this case created panic about the severity of the child's condition and the theater director overreacted. No, a child who is 10 doesn't need a peanut-free zone or to have peanuts banned. You aren't going to die from someone else eating peanuts (and I say this as another severe-peanut allergy sufferer). Wash your hands frequently and don't eat something you haven't brought or prepared yourself. Not complicated. And a child that age is perfectly capable of self-administering an Epi-Pen. Other kids and adults can easily be trained on administering one. Just pull the pin and press. Easy peasy. My 7 YO can (and has) administered one. Or get an auto-administered one. This isn't the crisis that either side is making it out to be. A little flexibility on both sides could have prevented this conflict.
19
@Michigan Girl In a room of 10 year olds, it would be better for it to be a peanut free zone. My sister has broken out in hives at a circus that was filled with peanuts. Although not all areas are that filled with peanuts, cross contamination from other kids is still a factor .
8
@Michigan Girl well my kid has reacted to being touched by others who handled peanuts. So it’s not 100% in your control, which i think you would know as someone with a “severe” allergy
In my experience, behind allergy sufferers who minimize the risks often is someone who doesn’t have a true allergy in the sense of an immune system, respiratory response to allergens...
10
@Michigan Girl What a breath of fresh air your voice of reason in this ridiculous fake crisis. I appreciate your making sense in this whack-job debate.
1
An informative and relevant story in the NYT from March 2017:
"Should a Family Member Expose a Niece’s Fake Food Allergy?"
https://www.nytimes.com/2017/03/15/magazine/should-a-family-member-expose-their-nieces-fake-food-allergy.html
3
@Dan M Personally, I think the OP in that article was an idiot. However, some parents do over-exaggerate allergies. I know of a parent that insisted that a school ban every child from using sunscreen for her peanut allergic child. When the school refused, she claimed her child was being discriminated against because another kid's sunscreen could contain peanut protein (this isn't an actual thing, BTW) and her child couldn't be outside all day for field day as a result. Although there are certainly people with very serious and life-threatening allergies, they don't represent the majority of kids with food allergies and parents can be very, very irrational about the actual risks of food allergies to their child.
5
@Dan M Not every allergy is fake.
3
Over the years I’ve developed lots of auto immune diseases on top of having childhood environmental allergies severe enough to need desensitization shots by age nine, and then developing lactose intolerance by age 12 (which is genetically triggered and not a disease). I have doctor diagnosed celiac, asthma and an auto immune skin condition now as well and can barely tolerate even a sip of alcohol or more than tiny amounts of caffeine. Very grateful the celiac did not rear its head until I was in my 50s. It was bad enough being a kid who didn’t drink milk. The worst teasing was from extended family. I feel for kids who are surrounded by bullies (apparently children and adults!) telling them that they aren’t normal because of dietary restrictions or worse outright denying that food intolerances and allergies are real. The list of “normal” stuff I don’t consume is very long but at age 63 I know that’s just fine. I wouldn’t have had this confidence at 12 or 16 or even 20.
2
If your child is too sickly to interact with other children keep them home..
7
@Pw Read the article again - if you read it at all - this child is NOT TOO SICK to interact with any children. He unfortunately is severely allergic to nuts.
25
@Pw. How very hateful that comment was. By your logic any kid that has any problem should stay in the house. Good grief how ignorant and cruel. This theater director sounded like a hateful cruel prima Donna that couldn’t take feedback or make reasonable accommodations. She needed to go and let someone with real compassion and intelligence take over. Sheesh.
Hope you or your family never have to deal with any disability of any kind, you sure won’t be supportive. Shame on anyone that isn’t ok with helping kids have a normal life.
43
If an adult is too self-centered to interact with a child in her care, keep HER home.
10
Seems that the compromise here is for the state to cover the cost of training to use an epipen - and maybe an insulin shot too for diabetic kids while we’re at it — but for Good Samaritan laws to protect the program in the event something goes wrong.
1
@Jeffrey Goldman
There is no cost for epicenter training in most places.
4
Epi-pen training takes all of 10 minutes, maximum.
3
@Jeffrey Goldma
Here's your free epipen training:
1. Pull blue cap straight up.
2. Put orange tip against thigh - no need to remove clothing.
3. Push autoinjector into thigh until it clicks.
4. Hold there while counting to three.
Easy-peasy.
1
Most of the comments are related to legal liability and maybe that's the issue that should be addressed. What about good samaritan laws? There should be epi-pens everywhere in places where people congregate. My son learned to administer an epi-pen when he was 10. It took less that 5 minutes and we practiced on a orange. Since it is administered through clothing it is a pretty good simulation. His elementary school teachers learned to use it to. They were more concerned about saving his life than legal liability. So was I. As he got older he showed college roommates and RAs how to do it. The device is a marvel. I learned that when he was 8 and had to use it, something I never thought I could do. Then you watch your kid's lips turn blue.
33
The vitriol elicited by food allergies is really quite remarkable. I recall a comment on a NYT article about the dangers posed to allergy sufferers by the bullying tactic of forcing others to ingest food. One parent ranted about the need for such "abnormal" kids to be segregated in special schools/centers. No, they were not referring to the bullies. Can't have some healthy bully subjected to undeserved legal consequences for manslaughter when they are just having good clean fun.
But seriously, anyone who supervises kids has some basic responsibilities which ought to include things like basic first aid up to and including CPR. Adding an Epipen injection is no biggie. Anaphylaxis and death can occur totally unexpectedly e.g.bee sting. Kids don't mind missing nuts to accommodate a friend. And missing nuts for lunch has certainly never killed anyone. My son has allergies and his friends are always careful to ask. If we cannot be examples of good behavior to our children, can we, as adults, at least learn from them?
48
Being able to care for children in the event of an emergency is part of the job if you are a teacher or director of a program like this. If you don't want to learn CPR or how to administer an epipen, you're in the wrong line of work.
59
I was a licensed special Ed teacher working with kids in public middle and elementary schools. I did not have to learn CPR or anything else in the area of life saving. such training was not required, asked about, expected or paid for. I did however have to take a CPR class for my preschool teacher’s license. Same state. Go figure.
2
So proud of Mason and Sam!! Stand in your truth!! Great self-advocacy!! I have a son with multiple food allergies and have had several emergencies. He’s old enough now to know what to do and always carries and Epi pen. I have always trained his friends’ parents and our local activities and teachers are willing participants. It’s the law, and it’s compassionate. Everyone should be trained! It’s just so easy! Administer pen and anything else necessary (my son also uses Benadryl and asthma inhaler for emergencies) and then call 911. Procedure not unlike a heart attack! Would this group discriminate against a 75-year-old man with a heart condition? I doubt it.
21
Sad for the kid but I wouldn't want to be responsible for him when his parents weren't around. That's alot to ask of people. Sometimes the epi pens don't work and children die.
9
But at least you could do the reasonable and humanly responsible thing: TRY.
3
Wait, MCAD made a decision in a case in only 5 months? Must have been a high-profile case. Mine languished for two years and was never ruled on after I ran out of money for the lawyer. But if you're famous, or your cause has been in the news, they actually do something. Nothing changes.
4
The topic of peanut allergies in school and activities is insanely contentious. On the one hand, you have parents that are - rightly - concerned over the physical and mental health of their child. You say have them sit at a different table? Have your kid sit separately at lunch for a whole school year and get back to me on how they feel.
On the other, you have parents wondering why they are banned from using a staple food like peanut butter for lunches and snacks. You say use a replacement? Go ahead and tell a low income family they need to use soy butter that costs twice as much for half the amount. Tell them they cannot not send nuts of any kind - one of the healthiest, cheapest categories of food out there - because one kid out of 500 has an allergy. That they can only send prepackaged, nurse approved snacks.
Latex allergies are the same. Gotta double-check those eraser and glue ingredients, though most school-supply companies are already on it.
This story is being lived out in school districts across the country. It takes a village to raise a child, but the constant pressure to accommodate those afflicted with food and latex allergies are leaving the parents and the villages frustrated. People need to start discussing different solutions, and there needs to be more empathy on the side of the village and more appreciation on the side of the affected parents (thankfully, most kids are blissfully still innocent).
26
@htg Exactly. Peanut bans for older elementary kids are silly. No one with a peanut allergy has died because someone near them ate a PB&J, particularly when the eater is in a classroom 5 rooms away from the child with the allergy. Does it make sense in classrooms at the lower levels? Sure -- because kids are slobs and they get stuff everywhere. Our school seems to have split the baby by not allowing "dangerous" foods in the classroom and but allowing everything in the lunchroom. It seems to work for everyone and there have been no incidents.
12
@htg put it this way when that 1 kid out of the 500 dies in front of the other 499 - what will be the impact on them? Since people can only think selfishly - the other 499 kids will have to experience this 1 poor kid dying all because their selfish parents couldn't or wouldn't avoid nuts in school.
3
@Vgg
This is precisely the sort of comment that does NOT produce better discussion or solutions. Your response falls instantly back on the "bubble theory" parenting: there is the threat of serious danger, so it must be avoided at all cost, and all others must assist me in avoiding it at all cost.
There is inherent risk in just about every activity performed under the sun, with driving a car being the best and most lethal example. But my risk as a driver to you as another driver or as a pedestrian does not, and should not, preclude me from operating a vehicle around you at all times. Instead, we have rules and training that govern the behavior drivers and pedestrians.
THAT is the discussion that needs to be had. What are the rules and training than need to be implemented to give all parties involved safety while respecting, to a degree, everyone's autonomy - which whether people admit or not is one of our most prized possessions.
I know it can happen. It's called regulation. It works pretty well for communities, if people are willing to put in the time and energy to think it through.
5
I can understand this director’s reluctance. I get the sense that she is not worried about providing a nut-free environment, or training her people to use epi-pens. What she is worried about are the things over which she won’t have any control.
What if another kid eats a peanut butter sandwich at home, wipes his mouth with the sleeve of his coat, and the allergic kid bumps up against him? What if the allergic kid runs backstage for a minute to locate a prop, and no one sees him go into shock until it’s too late?
If a child has that level of allergy, a completely controlled environment is the only way to guarantee safety.
18
No. It doesn’t take a “completely controlled environment.” It takes a little education and a lot of compassion.
3
@Susan Frierson, no it sounds like what cruella is worried about is herself, herself, herself. She lacks compassion and humanity and sounds quite narcissistic and cruel. Shame on all adults that have zero compassion for anyone but themselves. America is so cruel and hateful now in so many ways. Shame on all of you.
6
People who work with children, including foster parents, daycare providers and lifeguards, are often required to learn CPR as part of their certification. I have never once heard someone argue they shouldn’t learn CPR because then they would be legally liable. Why is this any different?
CPR classes are readily available in the community. Would it not makes sense to amend current CPR classes to include EpiPen injections (and perform the Heimlich maneuver as well) as those are far more likely to be needed by children than is CPR?
25
@Anna Well, with the prevalence of school shootings, how about training all adults in Stop the Bleeding, a course teaching the use of pressure on wounds and use of tourniquets. Sure.
2
As a Girl Scout leader, all girls are welcome but if an epi pen is carried by the scout, their parent must be present at all times. I cannot assume that responsibility. What if there is an episode while I'm out of sight, I could never live with that.
26
@LAMom If you can’t assume responsibility for the troop, you should not be a “leader”. An epi-pen is the simplest form of emergency care to administer, and dialing 911 isn’t challenging. Your choice (and it IS a willful choice) to act in this manner indicates a level of ignorance and cold-heartedness that makes your intentions suspect. This isn’t the girl scout way.
39
@Pat s No, it indicates a recognition that she's a volunteer and didn't sign up for administering medications. Would you trust a parent who is uncomfortable administering an Epi-Pen to give it properly? I know I wouldn't.
18
@LAMom I don't understand why you are saying this. in our troop, the child carries one, the first aider carries one, and the ENTIRE TROOP (starting at age 9 or so) knows how to administer an EpiPen.
23
My child had accidental peanut exposure during a Cub Scouts camping trip that we attended. As it was our first allergy emergency, I was unfortunately rather flummoxed. The scout leader didn't miss a beat, and administered the Epi Pen. Luckily he had plenty of allergy experience with his own child, and is a dear friend of ours. I'm not sure what I could have expected with a less experienced person leading the group.
It does not seem unreasonable to ask children's class leaders and community groups to be prepared for allergy attacks. A brief training session, and the appropriate documentation would likely suffice for the worst case scenario.
20
@The Buddy
You, as a parent of a child with food allergies, were flummoxed in an emergency involving your own child and needed the help of someone with plenty of personal family experience to come to the rescue.
Then you go on to say how a brief training would likely suffice for worse case scenarios.
The only reason I can see for having selected your comment to publish is to illustrate the irrationality of some parents of children with issues and how readily they pass on the responsibilities of extreme care of their children to others.
20
@Richard B
Children with food allergies have to live in the world without their parents with them 24/7. I have a child with food allergies. I work, my husband works. My child goes to daycare and they better be well trained. What, as a parent, am I supposed to do, quit my job and follow my kid around until she is an adult?
9
@Joanna Hahn
My point is where do you draw the line of caring for people with special needs?
Whereas we all have to work and get on with our lives, we need to recognize that not EVERY opportunity is open to us just because we want it to be so. This is true for people who do not have special needs as well as those who do.
In the case in the article it seems to me that the child can 1. Bring his own food. 2. Not eat the food of others or food that is provided.
I don’t think this is an unreasonable solution.
If you say that just being in the presence of others eating allergens is enough to endanger the child, then that child should only participate in environments specifically intended to cater to his needs.
Also if the parent knows or suspects that the child will act irresponsibly then the child should be ineligible to participate.
With respect, the parent should have signed the same waiver limiting responsibility for this child, like all the other parents. This does not mean that the theater group is not responsible for the child but that the child will get the same attention or rather the appropriate attention as other children. If the child NEEDS surveilling 24/7 and the group cannot accommodate, well, it’s unfortunate.
Of course this article portrayed Ms. Rubinstein as unsympathetic. I suspect that perhaps this could have been handled better.
10
Mason's mother should consider medically supervised desensitization therapy for his severe food allergies. Prospective moms without these allergies should consume both peanut and tree nuts during pregnancy and lactation, and administer to babies in early infancy to have their developing immune systems recognize these nut proteins as safe. More vegetarians means more nut consumption, a very healthy snack food for kids. As the mother of a vegetarian kid, if she could not have peanut and tree nut butters, it would be cheese most every single day, and vegans do not even have this option to consume vital protein. Because people bring in their food for consumption in this situation, I recognize the difficulty of monitoring for nuts, nut butters, nut oils, and all the many, many foods that contain these; plus the manufacturers who run nut-free products on the same lines as their nut containing products, which makes this a next to impossible task to guarantee. If the food service operation was in-house and no one brought in outside food, it would be much simpler, but obviously not something a community theater group can sponsor. Maybe the family of children with severe allergies could have someone assigned to stay with their child, like kids with other severe disabilities often do. I do not really see this as a malicious situation but more concern for where the legal responsibility lies for kids with severe allergies who sign up for outside activities.
5
Medial desensitization therapy is not yet FDA approved for peanut allergies.
6
@sleeve As a parent of children allergic to both peanuts and all tree nuts, I have learned that the cost for this type of desensitization therapy is very expensive, and is not covered by most (if not all) health insurances. Expensive as in, a $5000 deposit for just the first 6 months of treatment; the entire therapy (for one allergy) costing $12000+. There are children who are allergic to peanuts and all tree nuts; this again makes the cost of treatment astronomical for many families, who cannot afford it. Additionally, a child can complete the desensitization process, and still eventually experience an anaphylactic reaction (years later).
5
@sleeve Desensitization is not an option for everyone even if it is available. My daughter takes a nut-free vegan lunch nearly every day to school and there are many protein options besides nuts (beans, lentils, seitan, tofu). She is also egg-allergic and I am quite sensitive to the allergy issues faced by families with worse allergies than hers. I wouldn’t wish these dilemmas on anyone.
2
Ms. Rubinstein’s email saying the staff will take the training but that kids are left alone for hours at a time, and also her threats to close the program, are really telling.
It was ridiculously inflexible/unreasonable of her initial reaction to be unwilling to be instructed (5 minutes) on how to use the pen.
I expect this probably escalated in small ways perhaps starting with the way the mother asked for the training.
19
@Midwest Moderate
The use of a device such as an EpiPen could result in a failure, which might create a legal problem for the person who wielded it. No one should be pressured into such a situation.
22
@Midwest Moderate exactly. She left eight year olds alone for hours at a time? Forget an allergy, what about a simple accident, or bullying? Kids learn how to use an epi-pen; any semi-cognizant adult should be able to.
9
@Rea Tarr the beauty of the Good Samaritan protection makes this argument a false flag. Stop making this fake claim.
8
Sorry folks - this was an easy to solve 'no brainer' - with all the allergies around these days - this theatre company should have long ago adopted a policy - No Nuts, Not Peanut policy - where No One shares food or drink - where only water is allowed.
I say this because - I am a mom of a severe Peanut /Nut allergy child -and - a Producing Artistic Director of a successful Children's Theatre Company - everyone has always been welcomed - we have a No Nut - No Peanut policy.
I know how to administer and Epi-Pen - and - at time of each child's registration their parents filled out their child's food, medicine and all around allergeries - with Parents signing a Waiver in the event of an emergency they authorized our company to call an ambulance.
When my son was young, a Cub Scout leader refused to not have peanut snacks and crafts during Cub Scout meetings - I pulled my son out of her troop and began my own troop with a co-leader in the town next door.
It is truly sad that this Theatre Producer was so stuck in her own 'agenda' that she refused to open up to be 'All Inclusive' for every child.
42
@Karen If your child is that sensitive keep them at home..
8
@Pw Or she can do exactly what she did, which is to create safe alternatives for her own child that also benefit other children. Some of us call that a win-win.
9
@Karen Nut and peanut bans are unnecessary and burdensome for managing food allergies.
2
How fast would this mom have been to run to the amulance chaser lawyer if her child had been incorrectly administered the epi-pen? It is an accommodation to allow a participant to have their parent or guardian present to administer treatments. It is not an accommodation to assume the role of underwriter for the child's health issues. And as for the kid who chose to confront the theatre director, it's perfectly reasonable to find that someone who would do such a thing based on "their" personal relationships outside the theater was not particularly appreciative of the value provided by the theater, and "their" attitude in a relationship such as actor-director would be particularly strained and disrupting to the mission of the organization and the obligations to it's other participants. But it's liberal Massachusetts, so of course the judges and administrative hearing officers are always going to find against the productive interests and concerns in favour of the entitlements and the minority groups.
25
@Gene there is no harm in "incorrectly" administering an epi-pen. In fact it's always best to err on the side of caution and not wait to administer if anaphylaxis is suspected. Any food allergy parent knows this and so should all caregivers and teachers. This really isn't hard. Just ban nuts and peanuts, let the kid bring his own food and institute a no-sharing policy.
11
@Gene she accepted liability for leaving 8-18 year olds unsupervised for full days. Supposed fear of lawsuits is disingenuous.
17
@CY Ummm...not. Injecting an Epipen in the wrong place or a vein can kill you. Injecting too many can kill you. Injecting an adult Epipen in a child can kill them. There's a reason why you are told to inject it in the outer thigh.
3
I see this time and again with my kid who has food restrictions. Other kids are great and want to figure out a way to include. Adults not so much. Some comments here reflect that. How hard would it be for a theater program to not have nuts? Not at all. Anyone working with kids now should be trained in using epi-pens. As another commentator pointed out there are more kids with allergies now. But too many adults are too busy questioning medical diagnoses with no medical training to be bothered.
33
@XX
It is not just establishing a "no nuts" policy, but accepting legal responsibility that it would be rigidly enforced, which would require monitoring everyone's outside food for nuts, nut butters, nut oils, and any and all foods that are manufactured on the same lines as any of the above. If you read food labels, many, many products state this as a possibility. Children can be desensitized to nut proteins. I am a Registered Dietitian Nutritionist and could not legitimately claim I could catch all the possibly offending products in everyone's lunches.....nor would anyone like having their food handled extensively for inspections daily. Kids forget stuff sometimes and not to be mean: a forgotten Snickers in a jacket pocket could kill Mason, to be clear.
15
I'm the mother of a peanut-allergic son who is now 26 and my experience with schools, summer camps and other programs was mostly positive. I feel for these kids and I hope Ms. Rubenstein has learned from this.
More disturbing to me was this tidbit:
"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).”
Regardless of my son's peanut allergy, I would never have enrolled him in this program...
34
I wonder if the unsupervised rehearsal time is a part of common knowledge in the program, though.
It sounds dangerous quoted this way, but I remember many times in high school theater rehearsal when my peers and I would rehearse without supervision, and many of my babysitters growing up were younger than 18
13
@Mtn14 High School is one thing, yes. But some of these children are as young as 8 years old. The older ones are not there as babysitters and who knows what goes on when the adults are not around. What kind of responsible program director would knowingly accept that kind of liability should something terrible happen?
14
@Carol Bloom That's why all parents have the option to sign the waiver.
7
My kid has multiple food allergies - some are severe enough to trigger anaphylaxis so he does carry an epipen. Obviously the ideal is prevention via allergen avoidance - so he's learned to ask the right questions and read labels. This should not, however, and must not exclude him from participating in activities that other kids are participating in and where a reasonable accommodation could be made. The operative word is reasonable (which is also what the ADA uses). These kids are to be commended for being their advocates and that theatre director could stand to learn a little compassion. We are extremely fortunate our own kid's theatre here in NYC has created an environment of inclusiveness, not turning away any kid for any reason. The staff welcome the opportunity to get epipen training - and have used the kids with allergies themselves to serve as the instructors. It's NYC, so there's a waiver signed for everything. We would be okay without the waiver. We should be supporting kids to step away from the screens and enjoy activities in the arts - not ostracizing them.
27
This is the kind of thing that would make me very reluctant to work with kids. I do not want to be forced to take training in how to use an EpiPen or risk being sued if I didn’t use it correctly. Sure, I will call 911 if asked, but I never wanted to be a doctor or a nurse. I also feel for teachers who are required to handle the medical problems of students that should be handled by an aide or the school nurse. At a guess, this (and increasing demands for background checks for volunteers, even in a very public group setting) is why some of these programs do shut down or have trouble finding volunteers. And, as a vegetarian child, I lived on peanut butter sandwiches because there was nothing else I could eat at school lunch. I don’t know that a whole school should be banned from eating peanuts or if it’s kind to the kid with the allergy to teach him that accommodation will always be made. There are probably other ways — peanut free table — for a kid like that to be accommodated.
52
@Bookworm8571
1) If you work with kids, you should be able to administer first aid. If a kid fell and was bleeding, you'd be willing to call 911 but not hold pressure because that's acting like a nurse? EpiPens are designed for non-medical professionals to use. In the hospital, we inject epinephrine directly into the vein.
2) Vegetarians eat more than peanut butter. You may have had a food preference as a child, but it's silly to say "there was nothing else" you could eat for lunch.
14
Peanut butter is the only thing you could eat?? Well welcome to 2019- we have almond butter, soy nut butter, sunflower butter, and the option to open your horizons up because it’s literally life or death for someone else@Bookworm8571
8
@JH And, as I said, this is probably a reason these programs close or don’t have volunteers. No, I do not want this responsibility for someone else’s kid. I am not a medical practitioner. I would be happy to call 911 or get a kid a Band-Aid or whatever is reasonable. But I suspect this kid’s mother would sue if something went wrong.
When I was attending school, the school served meat or potatoes with meat gravy. If I was lucky, I might get corn or peas or applesauce. The peanut butter sandwich was the only other option. My parents did not send me to school with a home made lunch. There was no salad bar. Aside from that, sun butter and other options cost more than relatively cheap peanut butter. Banning peanut butter from school is not insignificant.
9
Imagine you direct a drama program for kids. You're ready to deal with hurt feelings, juvenile and parental egos, and very often the kids forget their lines.
Then all of a sudden, you are forced to be responsible for a kid who might die on your watch. Die. Like, dead. And you can control some, but not all, of the factors that might kill them. Yes, you can learn to administer medical intervention, but what if you aren't present at the very moment when the breathing stops? And you know that, in fact, children have died from this condition.
Forget the legal/financial liability. How could you think about anything else each day? Is it enough to be able to say: "Well, the child PROBABLY won't die today?"
Teachers and administrators should accommodate disabilities, but if a child could die within minutes without giving them the right drug in the right way at the right time, it should, at the very least, be a shared responsibility between the parent and the teacher. Dropping the kid off with an Epi-pen and a note isn't enough.
75
@Stephen Wyman There was probably more to this story than reported in terms of the negotiations between the theater and the mom. It seems very likely the parent in this case was not willing to (a) sign a typical assumption of risk document and/or (b) acknowledge that the child would be required to self-administer the epi-pen. Let's face it, at 9 she is not literally going everywhere with the kid. Does she never drop the kid off somewhere without getting a guarantee that the house is 100% peanut free... or that an adult will be present with medical training?
20
@Gene
When you're taking care of other people's kids for a living, you are assuming responsibility for their lives. Any kid might die on your watch, regardless of a food allergy diagnosis.
And, yes, that mom probably does make sure whenever she leaves her kid somewhere that there is an adult who knows about the allergy and can administer EpiPens if needed. That's what being an allergy family is.
30
But there could be an unanticipated medical crisis at any point when you are with other human beings! So you propose never being responsible for any group of people? Never teach a class or drive a carpool or swap childcare with a neighbor? What if you are walking down the street and see another pedestrian suddenly collapse? You'd walk away so as not to be liable?
What a sad world we'd live in if everyone had this attitude. Learning how to use an Epi-Pen is a 5 minute lesson. Have the parents sign a liability waiver and get on with life. A no-brainer.
15
I saw the perspective of the mother of this child until the part where she would not accompany him and also would not tolerate the rehearsal time where the campers self-rehearse - I feel she is trying to have it all ways and being unfair.
34
But she said she would be willing to attend all rehearsals so she could be there with the EpiPen to administer it in case Mason needed it!
Untrue - the article says that the program director suggested this as a solution, and the family’s lawyer responded that the director was not making the necessary accommodations.
As much as I would like to support unlimited inclusion in the arts for youth, at some point the cost (time or money) of doubling or tripling the trainer supervision of this program will fall to someone. Right now the only immediate solution is the family providing that supervision. I don’t think it’s fair to suggest that the program director should have to foot the bill personally. And there is not any broader source of funding to provide the extra supervision, as there maybe should be, but look at where we are with such programs
11
Not true - “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!””
4
Reading further into the local paper it also appears mom wouldn’t sign a waiver of liability as she worried that would mean the theatre wouldn’t administer the Epi pen. There is more to the story on both sides than what is printed in this article .
96
@Lisa So basically, the parent wanted special, not equal treatment.
10
@Lisa
dear lisa and Michigan girl. yes, medical emergencies require treatment. when you have your heart attack, you will expect the EMTs to give you "special treatment" and not equal treatment to what any bystanders receive.
5
@Michigan Girl Not really, if there was any other kind of medical issue, then the child in question would be given appropriate medical treatment. And, equal rights isn't equal treatment, it's equal access...in this case to a safe environment.
As a scientist and a parent with a son who has an anaphylactic food reaction, I'd advise those who think this is "PC" or "trendy" that:
1) Accommodation of those with life threatening reactions to food has been the law of the land - The Americans With Disabilities Act - since 1990. That law, by the way, was enacted under a revered Republican president, who regarded it as one of his proudest accomplishments.
2) Anaphylaxis is neither new, nor a "food allergy." It is a violent circulatory collapse that killed nearly 2,500 Americans last year. It's usually to a protein in a family of food such as nuts, dairy or shellfish. Food allergies are a separate category which killed another 500+ Americans last year.
3) The increasing prevalence of both anaphylaxis and food allergies is real. It appears to involve both better diagnosis and early life environments. Ironically, super-hygienic households that discourage early exposure to particular foods or animals may be part of the problem, not the solution.
4) It is ridiculously simple to administer epinephrine or the like. Some pens even have a recorded voice to talk users along. Specialized training is not required. A child, literally, can do it.
5) Keeping children safe does not require "hovering," just basic awareness. Public schools, for example, have areas set aside for nut free lunches. Parents who are concerned about their child dying suddenly from exposure are not "helicoptering."
62
@SMB So what if the epi-pen brought in by the child is expired? Or the person administering it forgets something or panic's and delays the administration. Accomodation isn't insurance. The mom should have been compelled to agree to reasonable limitations on liability. The fact that she was not willing to do so says a lot about her character, and that alone probably had a lot to do with the position taken by the theater. Your point #5 is a big part of the problem -- at one point, public schools were getting advice that they needed to be 100% peanut free to accomodate kids with peanut alergies. That set a bar for which normal kids and families can be punished and subjected to Stazi style oversight because the person with the allergy is unwilling to accept any risk. When you set "zero risk" as the bar to meet, you are telling that operator that they have to become the underwriter for that risk. That is not just inefficient but morally incorrect -- from the standpoint of economic moral hazard.
15
@Gene OK, that is directionally correct about moral hazard, though something of a stretch regarding kids' activities. You are right that "zero risk" / "zero tolerance" regs are generally unworkable, as can also be seen in the justice system.
What I would like to see is people getting back to "reasonable" -- for example, first clarify, then advocate a solution without condemning individuals in opposing positions. You sneer at the mother's unwillingness to sign a waiver, and I agree it is a sign of a lack of trust. At that point, the application to the program should probably have been dropped. But to make a sweeping character judgment, it's not enough. Her mistrust may have been valid (*may* have been). You and I don't know the people involved, and the article, as you also noted, is necessarily incomplete.
4
@SMB - re "the law of the land - The Americans With Disabilities Act - since 1990. That law, by the way, was enacted under a revered Republican president, who regarded it as one of his proudest accomplishments. "
This boggles my mind here in the New York theater producer community, so much of which acts like certain Human Rights laws, like those relating to disability or even more retaliation for Human Rights violations which so many producers do without shame, simply don't apply to them - and these are laws (against bias and against retakliation) the disabled have had since the 1990s, but try to get them enforced with the State or City without being labeled a "handful" by the people choosing whose work gets done! In arts, unless someone actually says or emails "I am not using you or your work because you brought up Human Rights issues in the past," it's near impossible to prove why you didn't get work, as there are no objective credentials, of course. there are in almost any other field, but for artists - none, all whim even when things are going right.
And yet these very same producers get angry at the Pences of the world, when my LGBTQ brothers and sisters (my other minority, as I'm gay and have a disability) have rights denied - rights that Federally have not been enacted yet. I'm sure they see the irony, but just don't care, while these folks are looking down as "backwards" on people in states that haven't even enacted LGBTQ rights.
2
The fact YSP was going to shutter the program was not only discriminatory, but showed the lengths to which Ms. Rubenstein was willing to go to keep Mason Wicks-Lim out of 'her' program.
My experience has been when a person has been attached to a program as long as Ms. Rubenstien they begin to think of the program as 'theirs' and they make up rules based on their own dislikes and preferences. Mason ran counter to those preferences and Ms. Rubenstien threatened to shutter the program, the Young Shakespeare Acting Program rather than open it to a disabled boy, who was interested in learning the craft of acting.
Maso Wicks-Lim stood firm on principle and won his court case for future students. By standing firm he proved that two teenagers could defeat a system rigged in favour of the adults. I congratulate the two families and especially the students for their gumption. Happily they chose to go on with their lives and participate in programs where they were welcomed.
30
@Nelson "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." The parents had the choice of staying for the rehearsals to ensure their child's health and refused. Volunteers running a program asked to be responsible for a child's life in a setting in which they cannot guarantee safety would be irresponsible.
29
So do you think parents of children with food allergies have to follow them everywhere? That’s absurd. Or that the kids shouldn’t be at school?
9
@Nelson the mother refused to take liability and after all the suffering by the child, the other children and the program, he moved on to something else , leaving a destroyed program that had once benefitted others . The mother expected from others but was unwilling to give up.the chance of cashing in if someone made a mistake
6
The American Academy of Allergy, Asthma and Immunology has a page on their website that challenges the idea that even de-shelling peanuts, throwing the shells on the floor and walking on them can release enough peanut dust to induce anaphylaxis.
Delta Airlines seems to have stopped serving peanuts and they have stopped announcing that passengers are entirely disallowed from even opening a package of anything containing a peanut, in any amount, as they have done on at least 6 flights on which I have flown. They seem to have relegated responsibility for protecting one’s self from whatever one might fear back to individuals.
I know that my mother would have put a gas mask on me before she would have hidden my identity and told 300 people on a plane that it was their responsibly to keep the air free of peanut dust for me.
The argument that a child’s life is worth the inconvenience is a false choice. Well calibrated preparation, response and individual responsibility are better choices.
Regardless of whether these allergies really exist, controlling masses of people rather than caring for one’s self is completely inappropriate.
32
@Mike LaFleur You experienced it, so it's possible, but I wouldn't be so apodictic. It's not "completely inappropriate." It's worth investigating and problem-solving. Your text goes too far in favoring ignorance and inaction, in my view, particularly the specious aside "whether these allergies really exist."
1
@Mike LaFleur My son reacted to the dust in the air on a Southwest flight even after the airline graciously agreed to not serve peanuts on that particular flight. I did not know that could happen until I saw him break out in hives and start to wheeze. Pretty scary.
6
@Mike LaFleur I was served a bag of peanuts on a Delta flight yesterday, so it seems what you've heard is not correct. Unless you or another passenger asked the airline to make those "no peanuts" announcements when you fly?
1
It is not difficult to learn to use an epipen or to exclude nuts from food. Given how prevalent peanut allergies are, it is surprising to me that a youth program had not encountered this before, had no plans for it, and refused to take simple steps to resolve the problem. To balk until there is a law suit seems misguided.
31
@Alexandra Hamilton
It’s the liability question that is central..
4
Rubenstein agreed to change the snack and lunch policy, and agreed (even against her own discomfort) to get Epipen trained. The was what was requested. It may have taken a while to get there, but clearly she wants the program to continue as much as Mason wants to be part of it. I think that should be sufficient. Unless of course readers believe all parents should be hovering helicopter like above their kids beyond monitoring the snack policy, or Mason's mom being there just in case, Im not sure what else can be done that won't mean the program requires funding it can't afford. We have enough of a war on culture and education from this White House that I hope this suit doesn't put an end to the program; but that's where it looks like it will be headed. What a shame both parties can't find a reasonable middle ground.
18
This is what you get when political correctness runs amok .
When one person with the problem, an opinion or hurt feelings gets to dictate to the masses about what’s going to and not going to happen.
Some of these allergies, gluten, peanut butter etc. I have questions about, these things just didn’t exist 15, 30 years ago, if they did it was in very small amounts, today, half the population seems to have it, it’s more trendy than anything else. I’m convinced that people get off telling other people that they are allergic to some sort of food ,color or brand of car !
As these children and adults bask in the attention of false victimhood, valuable programs have to suffer as well as multitudes of people.
15
@There - actually, it's not "political correctness." Whatever your skewed definition of that phrase may be, the bottom line is - it's the law. It's the Americans With Disabilities Act, which requires reasonable accommodation for disabled people. What those accommodations are depends on the circumstances, but apparently here there was a refusal to even consider working it out. So you might not like it, but I'm sure you are a law-abiding citizen who would support the law of the land. And the ADA is that law.
44
@There, yes, the percentage of people with allergies has increased, for as-yet-unknown reasons, but they're real ...and they existed in the past.
10
@There Being skeptical of gluten is unfortunately common, but being skeptical of nut allergies is just… nuts. Do you understand how many people have died from peanut exposure? It’s not subjective.
22
Just for the record I need to ask, where was peanut allergy when people who are now over 60, and ate the butter form of the legume almost every day, were kids?
16
@CK That you didn't grow up with it and don't understand it doesn't mean it isn't real. Why peanut allergy has taken off is not, so far as I know, definitively understood. Maybe because peanuts have been used as adjuvants in vaccines? But anyone who has witnessed an anaphylactic response won't forget. You probably did grow up with adults who could be bothered to spend a very few minutes learning to use an epipen to save a child's life.
16
@CK Food allergies in children have increased over 50% from 1997 to 2011 (CDC data). No one knows for sure why, but few theories have been proposed - whether it's the "hygiene hypothesis" (we're "too clean"), environmental changes or other genetic factors, such as what the fetus is exposed to while in the uterus. So the 60+ year olds grew up in a different less-allergenic environment than today's kids. My wife and I have no food allergies. My son has many food allergies, some life threatening. we're at a loss too.
15
@CK When people who are now over 60 were children (myself included), there was no internet and little was known about food allergies. Do you think that just because you personally never heard of someone having an anaphylactic reaction back then, or dying as a result of eating something that they were allergic to, that it never happened?
9
I feel like something is missing in this story.
I'm surprised that this program, in the Nanny state of Massachusetts, isn't required to have adults with CPR training and that the Director took such a negative stance to this. It's hard to believe that an organization with a building in a "Arts Center" is so self-sufficient that they can afford to act in such a way.
8
Sam and Mason are the kind of children I'd love to have.
62
@Kathrine I assume you are being sarcastic. They are the kind of children I would advise my kids to avoid behaving like.
6
@Gene I guess you would not like your son to stick up for a friend . And it is ok for an adult to penalize him for doing .Also what exact behavior did Mason engage in that you find offensive -having an allergy to peanuts ?
How many adults are supervising this group of children at any one time? If you can't find one who could take the Epi-pen out of the kid's pocket and inject him, you don't have enough.
35
@Presbyteros I too am puzzled by this--bystanders have administered Epi-Pen injections just by reading the instructions on the box QUICKLY. The thing is designed so that anyone, anywhere, can give it without instruction. I am also wondering what sort of children's program leaves children without adult supervision for "hours at a time, full days." That makes me think of nothing but Lord of the Flies.
43
@sherry Fowler I agree! I wouldn’t want my child being left without adult supervision for long periods of time. Are the teenagers in charge then? That seems like a bad idea.
12
@Presbyteros The article is lacking in that respect. Apparently, it was reported in the local press that at least one volunteer adult for the program said explicitly that he or she would take responsibility. And there was delayed but written agreement by the director that she would learn the easy pen routine, too. So, of course, there were people ready, willing, and able to step up.
Why the problem-solving process broke down and went to court is unclear from this article. Some people blame the mother's final unwillingness to sign a liability waiver. Hard to tell, but that's one reason we have courts. Lots of people are unable to reach agreement on their own. That, in turn, may have a link to poor education, lack of role models, the US litigation culture, etc.
1
And if her kid dropped dead because of some exposure to nuts, would she or won't she sue the children's theater program?
28
Not if she was required to sign an airtight letter of indemnification. While the mother should not have to live in fear of her child unnecessarily dying of anaphylactic shock, the theater should not have to live in fear of being unnecessarily being sued.
3
@sjs Parents of allergy kids just want their kids to have reasonably safe environments, not punitive payments. Yes, our child had accidental exposure at a restaurant that led anaphylaxis and a trip to the ER. No, we didn't litigate.
Bravo to Sam! True friends like that are one in a million — an example for us all.
46
So I know all of the players personally. The program had the precedent several years running of it being a drop off program. Furthermore...the youth participants (ages 6-18) had quite a bit of freedom and responsibility in terms of directing the actual plays, running rehearsals etc. There would be rehearsals and an adult might only be there to settle them in and later dismiss them. The initial request from the mother was epi pen training and a peanut/tree nut ban on lunches/snacks during these rehearsals. Mom was told the food the kids brought could not be monitored and the director was "uncomfortable " using the epi pen. Mom was told for Mason to enroll SHE would need to stay on site. Way to ostracize the "new kid". The director was rude and unreasonable and created tremendous conflict certainly for Mason but especially for Sam. Sam's email requesting the director change her mind regarding Mason was direct. Pointed and challenging even. But not rude or disrespectful. As for as why a suit? There are no damages being sought. It alleged discrimination and asked for remediation. That point has now been upheld by the US Department of Justice and the MCAD. Mason is no "special snowflake". He is (and has been the 5 years I have known his family) kind, thoughtful, wise beyond his years, vigilant, cautious and wanting to do things his friends did. He has a life threatening allergy. He could die! How do you not try to accommodate him?
257
@Myanna If part of the philosophy of the theater was self-direction among the kids to explore their own interpretations and acting dynamics -- a very liberal, progressive ideal -- then the presence of "staff" to inspect their little lunch boxes and to hover over their shoulders would have fundamentally disrupted the functioning of the organization and altered the way the kids were interacting. Having the parent -- who is not an authority figure to most of the children -- allowed to be present was itself adequate accommodation. You talk about the psychological effect of "ostracising" a kid by having a parent present or available on hand, but you completely neglect to consider the psychological dampening effect on the emotional self discovery of fledgling actors of putting an adult in the room at all times. The program as you describe it would have been quite common years ago among arts camps. Now decisions like this ensure that every time a kid is at risk, there must be two adults (one to corroborate the other's story) and a lawyer present. Next time, try to consider the bigger picture... including what it said about Mason as an individual that they were unable to discuss their position directly with the director, and in making a formal demand (one that very likely had the tone of being coached, or even written by a parent), violated the kind of trust and kinship one expects in a rather personal atmosphere or the arts school between mentor/teacher and student.
24
@Gene It's essential to consider the at least two sides of the story, as you have eloquently done here. From a distance, I doubt any of these people are evil, just rigid and afraid. You probably also know the phrase, "When the student is ready, the teacher appears." People and programs change; there's nothing sacrosanct about unsupervised rehearsals. No doubt an interesting experience for the kids involved (I was put in charge of a small arts program as a teen with other teens and without supervision for 2 years, probably to get me to take responsibility and not be delinquent). But it's not essential to learn acting or how to get along, solve problems, learn to run a theater production. There's also nothing preventing a reversion to the old ways later on, if desired.
Also, there's nothing wrong with a kid being coached to stand up for his friend. That's how it should be. I'd only object to making a maudlin meal out of Sam supposedly working alone if that's not how it was; if it was Sam and his family, fine, bravo!
4
@Myanna
I grew up in the 70s. We didn't have adults around 24-7 and were the better for it. This director, it sounds like she is trying to create a similar atmosphere of freedom in order to spur creative performance, but Mason cannot be placed in those situations, so maybe this program was not a good fit for him.
15
It is ridiculous to force those in the program to be responsible for assessing the child's medical state and administering medicine appropriately. Sure, he should be allowed to participate, but his medical care is his (family's) responsibility.
There has to be a limit to accommodation!
35
@MHW
all school and after school and childcare programs are required to have an allergic child's epipen available for use in the state of MA. It is daunting at first, and a challenge to think about. But training reveals the simplicity of the pen. And of course we as communities that include children should accommodate to ensure the normal development of all children with disabilities. It is not really that difficult. Perhaps a shift in head set
42
@MHW are you familiar with the Americans with Disabilities Act?
10
@MHW Dismissing this as "ridiculous" is irresponsible. It's the law, it's life, it's reality. Like AIDs -- "suddenly" there is a near-epidemic of these dangerous reactions to nuts. It's everyone's concern. Just as other disorders are. We're all part of the community; could be us/our kids next year.
The rock-climbing club has been able to accommodate the kid in this article. Kids have been saved in snow avalanches in Austria this past week. That soccer team in Thailand was also saved. Because people were willing to try. It's not ridiculous at all.
3
I've been active in community theatre for over 30 years. Based on Suzanne Rubinstein telling parents she would "brook no criticism," I am left to conclude she is a Grande Dame found in many such groups. From her point of view, the world revolves around her. No one dare criticize her. She is surrounded by sycophants who turn a blind eye to her behavior. And she lives in a world of drama of her own making.
I salute Mason and Sam for standing up to Ms Rubinstein. They acted like adults; the adults in this theatre and in Turners Falls did not.
116
@Robert Agree in principle; I salute them for doing the right thing, but consider it likely that both Mason and Sam were backed by their families, which is as it should be.
1
Way to go Mason! Way to go Sam!
This quote really moved me:
“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.”
How brave and wise of Sam. Kids like these will build a better future for all. As adults we can learn from their examples!
46
As a child who grew up with a deathly peanut allergy, I dearly relate to this article. It is so hard to grow up with this kind of allergy. In kindergarten I was forced to wear a button that said my name, followed by NO NUTS in all caps. I can't tell you how many places I couldn't eat at because they had unsafe practices with their food, or couldn't tell me what was in it. Or when I fly in airlines, how often the stewards don't care when I tell them I have a nut allergy. I'll ask them to replace the snack, since I can't be in confined places with them, and they respond with a "it's not their problem, the snacks are already on board." It's very hard to grow up with this kind of allergy.
33
It takes about 10 minutes tops to learn how to use an Epi-pen. It's usually taught in conjunction with CPR, which, as an adult working with children, Ms. Rubenstein would be wise to have herself trained in. As a teacher, I am required to attend training and renew my certification every two years.
45
More like 2 minutes. Now there is the Auvi-Q which has a speaker and tells you how to use it on the spot. No training is needed really.
4
@Carol P the point is the teacher is not always present, the kids are given time to learn and ooerate the plays themselves. Having an adult in the room changes the program and like most programs , volunteers are used. No way should a volunteer be responsible for going through lunch boxes , doing searches , watching for symtom, and administering shots . The mother did not even want to sign the waiver, she wanted it all with no.effort on her part
2
I see 2 reasonable options: (a) camp accepts the child like any other child; he avoids peanuts and carries around his Epi-Pen like he does anywhere else. If he experiences a reaction, the nearest person tries to assist him, like would occur anywhere else. His parents sign a liability waiver. Or (b) his family hires a dedicated, trained an adult to [unobtrusively] keep near the child at all times and administer the Epi-Pen and CPR if needed.
Either way is reasonable, doesn't place undo burden on a small program/camp, and results in the child being able to attend camp like everyone else.
57
@GBR But would you sue?.
I've made my own decision to avoid as much as is humanely possible any situation where I might be exposed to thankfully very few serious food allergy situations. Just like I left out the correct punctuation in that first sentence. My drug allergy situation is documented but I still wear a med-necklace alert. I'd even go for a microchip implanted in my arm that could be scanned if that becomes possible. And I do carry two Epipens at all times and even as an adult worry about my speed/ability to administer them to myself if needed.
7
It is critical to make accommodations for anyone with a disability - whether it be physical or allergic.
The only thing I will add to the conversation - though it is irrelevant to this issue - is what you do when you have conflicting disabilities. I use, as an example, the fact that many children with autism have very limited palates and often will only eat one thing, such as a peanut butter sandwich. What happens when you have to accommodate both types of children?
We as a society need to figure out the best way to accommodate people with life threatening allergies without disrupting others or causing an excessively undue burden or legal risk. However, I agree with many of the commenters that epic-pen training could easily be done for staff and creative accommodations could be made.
31
@HN in the case of conflicting disabilities I would hope the one that could result in death if not accommodated would be the one that would take precedence.
16
The child with autism won’t die without a peanut butter sandwich at camp. But the child with the peanut allergy might die if the sandwich goes to camp.
14
@Angie I don’t want to fight, but I am curious what other people pack for lunch. Peanut butter doesn’t spoil (I live in a hot, humid area) and cold cuts are not healthy. Why should the vast majority of kids have to eat unhealthy food to protect a small minority, who should simply not eat other kids’ lunches. I truly don’t get it. Don’t eat my kids’ lunch.
8
I can totally see the director's point of view about the legal risk of having a child who may need an epi-pen shot at any time. The solution, of course was for the mother or another family member attend with the child. I have had allergies all my life, and have needed to carry a epi-pen at times. I would never had forced myself into any group that did not have resources in case I was exposed to any of the allergans, that can set of an attack. Too bad the lawyers will want $$ to close this case.
64
@stuckincali Epi pen training is brief, easy, and free. Alerting participants in the program that it's now a peanut-free facility is brief, easy, and free. Most schools nowadays don't have nurses on site all the time, and these are the measures they take. We certainly wouldn't expect a parent to come in and monitor the kid all day. The theater director could have spoken to the kid's medical provider if she felt uncertain about the danger involved. Any disability, food allergy or no, should be reasonably accommodated if at all possible. This one is very possible.
2
@stuckincali There are "good samaritan laws" that cover anyone administering CPR — you cannot be held liable for resulting injuries or failure to save the person. I believe they also cover Epi Pen administration and other emergency medical assistance. So, there likely would be no liability issue related to the Epi Pen.
2
This is blatant discrimination. I worked as a 7-10th grade camp counselor from 2006-2014, when I myself was 16-24. First aid, CPR, and AED training was required yearly, and included EpiPen training. I did have a student with a severe peanut allergy in that time--one so severe, his family would have to call ahead of flights to get planes specially cleaned. We had a camp-wide ban on peanuts. He carried one pen and us leaders carried another. We never had to use them because he knew his limitations. If I could handle that at 16, this program's "adults" are clearly discriminatory, selfish, and not trained to provide basic medical treatment for the children in their care.
196
@Katie Actually you're right but wrong at the same time. It's not just peanuts as he has a nut allergy. That includes nut oils in items other than food. Any lotion with nut oils is a major risk, any soaps with the oil, etc. You can reduce the risk a bit by limiting foods yes, but how are you going to reduce the risk of the people who come to see the plays? Or the people that from time to time have to be called in to do repairs? If it was a group that didn't have a bunch of outsiders coming in all the time sure what you suggested is possible but you can't really do that when its a open to the public situation.
17
@Katie Actually you're right but wrong at the same time. It's not just peanuts as he has a nut allergy. That includes nut oils in items other than food. Any lotion with nut oils is a major risk, any soaps with the oil, etc. You can reduce the risk a bit by limiting foods yes, but how are you going to reduce the risk of the people who come to see the plays? Or the people that from time to time have to be called in to do repairs? If it was a group that didn't have a bunch of outsiders coming in all the time sure what you suggested is possible but you can't really do that when its a open to the public situation. And whats worse is not all products have to list their ingredients so something could potentially have nut oil in it but you wouldn't know. Granted I'll admit maybe the way it's processed with remove that risk but it's also possible it doesn't. And I'll freely admit I don't know how much will trigger an attack but considering how he's lethally allergic, I would have to guess it wouldn't take much to put his life at risk.
10
@Paul anaphylactic reactions are to proteins, not oils. You must come in contact with a protien to incite this type of allergic reaction. People with peanut allergies are able to enjoy nuts as peanuts are a legume and crossreactivity occurs with other legumes: soybeans, peas, garbanzo beans... As ubiquitous as peanut allergies are (my daughter has one) the misinformation surrounding it does everyone a disservice.
16
It is disheartening to see a child being turned away from a program for this reason. The fear of getting sued is so misguided. There is no Good Samaritan duty in this country. No lay person is ever "responsible" for another's medical treatment. Also, there is no responsibility to "100% guarantee" a nut free environment to a participant with food allergies.
Since 1 out of 13 kids now have food allergies, EVERY school, pre-school and after-school/sports club in America is handling this issue, and none of this weird drama or exclusion. This is what normal places do:
(1) Safeguard the child's Epi-pen (let them self-carry if a doctors' note designates them sufficiently mature);
(2) Remind the other participants to keep it nut-free or offer a nut-free table;
(3) Be discreet about who the allergy child is so the group accepts the food policy and does not hold anything against one person; and
(4) When faced with the very rare event of a medical emergency, don't be scared to use the Epi-pen. They are DESIGNED for use by lay people. You take the cap off, click the thing in, lay child flat and call 911. It is not that hard.
If you are really that intimidated, ask for CPR training.
Administering Epi-pen is a moral obligation, not a legal one. There are Good Samaritan protections under the law for any lay person that bothers to step up in a medical emergency.
The fear of caring for a child with food allergies is unfounded. More education is needed.
97
@Susan
The fear of getting sued is not so misguided, its real and its realistic. I remember somebody dismissing the possibility of being sued because "they could never win". And he was right about that, the guy who sued didn't win, but the defendant had to go through the time, effort, expense, and trauma of being sued. Going through a lawsuit is a nightmare.
23
@Susan So well said. It is so sad in this country that people feel eating nuts is some basic right that must never be taken away. I don't have an allergy or have a child with an allergy, but I can't imagine putting my love for peanut butter over the well being of another human. Remember when some airlines stopped serving peanuts and people went crazy? I mean...really..they can't sit on a plane for a few hours without their nuts? So, your (2) is completely valid, but sadly there are many people who will demand the "right" to have nuts.
14
Except she got sued anyway!
1
Suzanne Rubinstein sounds really horrible. What training is required to use an episode pen? Virtually none. Totally lame excuse.
79
@John Mardinly Actually there are right and wrong ways to inject the pen. Some pens actually have a voice that tells the person how to inject the person with the attack.
4
@John Mardinly I think Suzanne Rubinstein sounds like a person who is running a theater program she loves and is worried about the additional responsibility and liability for taking on a child with a deadly peanut allergy.
Even if she felt comfortable with that additional responsibility she might have felt that creating a work space where every other adult and child took Mason's allergy seriously too. I'm imagining dozens of kids and adults and parents (with other children in tow) coming in and out over the course of a day...how would I assure that?
62
Ah, yes. Simple to use the Epi pen. Not so simple to assume legal responsibility and liability.
18
What is unclear in this article is what it would have cost the program to meet the mother’s requests. If it would have only cost them an hour or so of each adult’s time to learn to use an EpiPen, and the time to teach all adults & children the importance of not bringing peanuts to the program and of recognizing the signs a child needed help/finding that help, IMO the director was ridiculous and discriminatory to object and refuse to accommodate. If what the mother wanted was that the program hire several more supervisory adults to ensure no child there is ever not under adult supervision (lack of constant supervision was cited as a reason in the article), then I understand the director feeling frustration and that she might have to shut down the program for all those other kids if the funding was not there.
11
@Stacy Holdorf The article actually says that the DOJ found in 2016 that the theater program failed to make "reasonable" modifications to accommodate the child. I've followed this story for a couple of years, and I know from other articles that a food allergy advocacy organization even volunteered to provide training to the adults on how to use an epi pen.
21
You are ignoring the personal cost (and, possibly insurance cost) of assuming responsibility and the legal liability.
8
@Stacy Holdorf I'm guessing she didn't have an idea about the training as it's literally nothing to use a epipen. Take it out and remove the safety cap. Stab into thigh and hold for 3 seconds and then call 911. And why does everyone keep mentioning just peanuts? He has a nut allergy. That's any nut and products that aren't food but contain nut oils like lotions, soaps, etc.
2
Good grief. "Reasonable accommodation" is a two-way street, folks.
I work in an office where two people get very negatively affected by strong scents (perfumes, soaps, hair sprays, you name it). One of them gets debilitating migraines almost instantly. Am I banned from taking showers and getting manicures before work (nail polish is quite pungent) because of them? No. Of course not.
They have let the office know of their situation, and we refrain from getting too close to them if we have deodorant on (they have really sensitive noses).
The moral of the story is: the rest of the office gets to wash our hair in the morning with strawberry shampoo, and we don't rub our hair all over the people who are sensitive to strong odors. No one is threatening law suits. If your kid is allergic to nuts, tell your kid not to eat them. No one is making my office mates use strawberry shampoo. And it's all working out just fine.
It's America. People are allowed to eat peanuts. And use strawberry shampoo. Everyone needs to accommodate that.
43
@Nadia avoiding trace amounts of both tree nuts and all legumes (including peanut) has proved impossible for our child exactly five times in two years. Poor labeling or new allergens were to blame in four of those cases. This scenario has proved deadly for both adults and children and has nothing to do with the concept of avoidance. Epinephrine and quick action probably saved our child’s life three of those times and it was not self administered.
42
@Nadia And everyone gets to buy and throw away all the useless junk they want, even though the landfills are all full and there's nowhere to put it, and the fish are all laced with plastic and chemicals and other garbage, and there's arsenic in the rice, but we still get to do everything we want because it's AMERICA, right?
Just to take your argument another step further.
14
@Nadia surely you see a difference between a life threatening condition of a child and a discomforting situation for an adult?
35
"Ms. Rubinstein reversed herself and emailed Ms. Wicks-Lim that she was seriously considering “whether to close shop!”
The hysterical Ms. R is overreacting to an ordinary situation that thousands of organizations have learned to handle calmly. Melodrama only works on the stage.
183
I can see both sides of the issue but I really feel like Mason's mother was entirely reasonable with many of her suggestions. She really was willing to accommodate Mason to the program rather than making the theatre accommodate Mason and dismissing the idea of her being present to administer the EpiPen is really the most ridiculous part. I understand the director has concerns of being responsible for Mason when he's there but his mother really made every effort to make sure that he could be there while working with the director's concerns.
20
I am a physician and a parent. My children have no food allergies, thank God. My husband has multiple odd food allergies related to years of occupational latex exposure. It leads to hassle avoiding bananas, mangoes, kiwi, chestnuts, or avocado, but these are *minor* allergies. I eat them, the kids eat them, if they are used in a restaurant kitchen no one is going to die.
I think most parents in my generation get that the peanut and tree nut allergies are different. These kids can die, and we all know several kids of a variety of ages who are doing their best, along with their parents, to avoid developing secondary eating or anxiety disorders to go along with their nut allergies.
We have a duty, as a society, to do our part. a) To keep these kids alive by helping them avoid triggers b) To keep them alive by administering epipens if we ever need to c) To keep them included, everywhere, under safe terms. In many schools and programs, that’s no nuts or peanuts. Ok! d) To reassure them that they’re “normal.” Allergies are part of the modem environment that we’ve created for our children. e) To reduce the incidence of these severe allergic diseases in all people going forward. There’s a lot of progress here, which is great — but let’s not blame a generation of parents and doctors who thought they were doing their best.
These responsibilities belong to everyone. Not to one kid or one parent. I’m so proud when kids lead the way. Go Sam!
86
@Ace Why? This program is a small program, with a limited budget. Society cannot afford to adjust for every single person's needs or allergies.
27
@Ace J you forgot about potential reactions from nut oils in products outside of food though. It can also be found in lotions, soaps, cosmetics, etc. It all depends on how it's process though too. Though it seems the more highly refined it is the safer as the proteins get completely removed. It's much easier to control/restrict in school because it's already a controlled area but even then there are slip-ups so I can't even imagine how much more difficult it would be for a public theater with different people coming and going all the time.
10
Children and adults are fully aware of what to avoid, such as soaps and lotions. They are aware of their physical environment and watch for accidental contamination. They manage their lives around these allergens. Should there be an accident, someone, the adult in the room, can easily use an EpiPen and call 911. It's not that hard. If you have a program for children, it's part of the job.
14
I am a physician/surgeon who has allergies to foods and substances (nuts, iodine). I carry my own epinephrine and avoid the things that cause problems. I don't expect the public to accommodate me and don't count on accommodations. I can't bet my life on the behavior of others.
84
@njbmd Can you bet your life on your own ability to administer the epinephrine while going through anaphylaxis? We all depend on each other, at some time or other in life. The point of belonging to a strong community is knowing that there are people who will come through for you, and take some time to learn how to save a life should it become necessary. This is why I keep my CPR training up to date. If I believed that I was only responsible for my own fate, and no one would help me, I wouldn't bother.
31
@njbmd You are an adult. You are also a medical professional. Are you likewise willing to bet your life (Thanks, Danielle in Seattle) that you (or any pediatric patient of yours) would never experience loss of consciousness during anaphylaxis? Your comment is alarming and irresponsible.
28
@Danielle What training is there to update for cpr? Or do you mean like a refresher just to be safe? I don't think cpr has changed for a long time but I could be wrong I guess.
2
Ok. I read the article and then read some comments. Some of the people talking about their allergic kids having epipens and how easy it is to use a epipen and all: Did the fact the article never even mentioned once that the mother has her child carry an epipen bother you as it did me? All the part about them having to accommodate her fatally allergic child but as far as I can tell doesn't carry a epipen just in case? And if the program is large then odds are going to be there is going to be a kid around with peanuts or peanutbutter? and in the 6 months of trying she never thought of him carrying an epipen of his own? I think the group would have accepted him if two things happened. 1. Sign a waiver and 2. have him carry an epipen and know how to use it. I think it would be virtually impossible to keep a public theater free from possible contamination as you would have children, parents, and other people coming in and out of it quite often and there are bound to be people that have eaten nuts and the possibility of him maybe shaking hands with someone with that type of oil on their hands is probably quite good.
71
@Paul The article doesn't mention it but it is almost certain the kid carries his own Epi-pen if he has a life threatening allergy. That information certainly should be included in the article. The issue is that during an anaphylactic reaction he may not be able to administer his own medication.
47
@Paul I think you may be misunderstanding; I took it as a given that he carries his own Epipen and can self-administer if need be. The need for others to know how to use it is just because that's probably preferable until he's a little older and because of the possibility he'd be incapacitated by anaphylaxis. This family isn't demanding that the theater provide the Epipen.
37
@Paul
The boy carries his own Epi-pen, but might still require an adult to administer it in case of an acute reaction.
91
This article fails to mention that peanut allergies are highly preventable.
From a 2017 Time article summarizing recent research on the matter:
"the rate of peanut allergies was about 10 times lower for children who ate peanuts from an early age, compared to kids whose parents avoided giving their infants peanuts.
Then, a rigorous trial in which young children were assigned to either eat peanuts early or avoid them showed again that kids who were introduced to peanuts when young had up to an 80% lower risk of developing peanut allergies than those who were not."
http://amp.timeinc.net/time/4622667/how-to-prevent-peanut-allergy
15
@Brad It's only recently that parents have been given the advice to give peanuts earlier to children. When I was in training 20 years ago we were advised to instruct parents never to introduce nuts and peanuts before age 1.
Now with newer knowledge and guidance we'll see what happens with the incidence of peanut allergy as peanuts get introduced earlier, but otherwise for those kids that already have allergies, it's no longer preventable.
33
@Brad Our child was diagnosed at 13 months (first of many anaphylactic events—unrefined peanut oil) and had already reacted to exposure to trace amounts via widespread hives, which can mean many things in a baby—we made the connection later. We are not alone in this early diagnosis after infants have been “eating” normally. Not everyone will benefit from this new advisory.
17
@Brad Thankfully, my kids don't have nut allergies although one does live with celiac. Until you have a child in this situation, you probably can't appreciate how often infant feeding advice changes. For both celiac and nut allergies, I've watched new recommendations come out almost annually regarding timing of solids and introductions of various foods. I hope the latest advice about peanuts is correct, but Mason's parents certainly didn't have the benefit of it. And even if the latest advice lives up to its promise and reduces the nut allergy rate by 90%, we're still going to have a LOT of children living with nut allergies in this country.
17
I'm sure I'll be vilified as the heretic, however...The frequency of these claims of "severe" allergies and the overwhelming anxiety that these parents convey is de-sensitizing everyone! It is causing the pushback this woman has experienced. I have never heard a single parent ever say that their child has a "mild sensitivity" to an allergen and yet 99.9% of children have exactly that! The failure of medical professionals to properly instruct people on WHEN to use an epi-pen is also a huge problem. Anyone with allergies will have casual reactions that can be easily managed with an inhaler or benadryl and yet the parent hears "itching" and reaches right for the epinephrine as though it's the only tool in the toolbox! I fear that in today's overly competitive environment of childhood achievement these parents may be reaching for the wrong thing to distinguish their child as "special".
51
@Geraldine The severity of an allergic reaction cannot be predicted; past reactions are not necessarily an indicator of what future ones might be like. My 2-year-old is newly diagnosed with a tree nut allergy so I'm just learning all this myself. Her past reactions to exposures have indeed been mild and we treated them with Benadryl, but that doesn't mean next time it won't be full-on anaphylaxis. She'll carry an Epipen for life. I thank you for the education in the attitudes we'll see in the world as we navigate this as a family.
50
Try a little empathy and save your snickers bar till you get home. You'll survive. The child you're so casually dismissing may not.
34
Many food allergies *are* mild.
Peanut and tree but allergies aren’t typically. When they are, they can’t be counted on to stay that way. We don’t know why.
15
I am astounded there are parents out there who feel their right to eat peanuts trumps a child's life.
A life-threatening allergy is not a choice, but empathy and compassion are.
159
@Susan It's the proverbial tale of "The Boy Who Cried Wolf" The number of parents claiming their child has "severe" allergies overwhelms the statistical probability that it is true. People just get tired of hearing it.
56
@Geraldine My nephew has a life-threatening nut allergy. My brother and sister-in-law live in constant fear that he will accidentally be exposed and suffer anaphylaxis. They have had to create a list of restaurants they can go to that can assure them their son’s food will not be cross-contaminated. My SIL orders special Halloween candy for him so he can swap out his trick or treat bag.
Like many of the children with nut allergies that I have known, my nephew also has other health issues (asthma).
My nephew’s allergy creates constant stress and worry for his parents, who naturally are reluctant to leave him in the care of people who may not be as vigilant as they are about his allergy, since it could, quite literally, kill him.
But I’m sure all their stress and the daily impact my nephew’s allergy is just their overreacting, because they really * love * all the emergency room trips, trying to find epi-pens and have limitations in their own diets.
38
@Susan I'm astounded she doesn't have her child, who has a fatal food allergy to nuts, carry his own epipen around with him. Not so much because he might accidentally eat peanut butter or eat a nut, but because nut oil in lotions/moisturizers can trigger the allergy. If you think about it, there's effectively no way to turn a theater into a 100% safe zone for food allergies. There's just too many people coming and going. I think both sides could have handled this better though. Also surprised the mother didn't ask if she could sign a waiver and have her son carry his own epipen. Would have solved the problem to both sides satisfaction I imagine.
15
It's unfortunate that this case caused such a rift in the greater community. But I think it shines a light on the marginalization that many people with allergies feel on a day-to-day basis as they try to live normal lives.
As a parent to a child with a life threatening allergy, I'm surprised at how often people are more concerned with their right to eat a certain food at that moment than with the safety of my child. Greater understanding and empathy of what it feels like for these children could go a long way to a more inclusive experience for everyone.
Kudos to Mason and Sam for speaking out!
48
@S B I think there might be some regional differences.. where I live in Seattle, every time I sign my kids up for a new camp or school, I expect to receive an email about what foods are banned in snacks/lunches based on the allergies of kids in the group. One week of camp a couple of summers ago there was a ban on peanuts, tree nuts, and dairy. The mother of the child with dairy allergies sent an email explaining to everyone that it was indeed a life-threatening contact-allergy: if dairy came into contact with the child's skin, they could have a severe enough allergy to die. She offered to provide safe lunch & snack ideas to anyone who needed them. I bought veggie cheese, sun butter and eggless mayonnaise. My kids were not psyched, but for one week they could deal with it, and I told them to think of the kid who never gets to eat nut butter or real mayonnaise or cheese. I think some parents were annoyed at the inconvenience, but not enough to make an issue of it- and many were compassionate and empathetic.
52
@S B People are just maxed out with special requests and do not have the capacity to entertain any more. You need to respect that others have the right to say "no, I can't help you."
22
@geraldine Last year, a parent in my child’s classroom was clearly miffed that she couldn’t send in an almond cake — her child’s favorite — as a class treat on her birthday. Like you, she felt like “enough was enough with the allergies.” Her opinion was that her daughter had a right to almond cake at school if that’s what she wanted. Two weeks later her child stepped on a wasp nest, was stung many times and went into anaphylaxis. She was rushed by ambulance to the hospital where she stayed overnight and this child now carries an epipen herself. Needless to say, the mom has changed her tune. I hope you can a find a way to have empathy for others in this situation without having to see someone you love suffer like this. We all need to look out for each other, even when it’s not convenient.
119
What is missing from the discussion is the major responsibility thrust on people that interact with these peanut allergy students. I had a student with a violent allergy to peanuts, and while I did what I could to make the room peanut-free, I was terrified I would mess up one day and cause harm to the student. Her needs are legitimate, but it is scary to be the responsible adult of children that are not yours when it comes to a medical issue. I do fear that if there was something I didn't do quite right in treatment, I would be sued. I absolutely respect what parents of allergy sufferers have to go through and the amount of vigilance and fear they experience, but I do think there is a valid fear of being responsible for someone's medical treatment when it is not someone personal to you. That's a hard hill for some to climb. Maybe if a good samaritan law is in place, or some sort of document the theater could sign to say that they will try as much as possible to create a peanut-free environment and be trained on EpiPen, but they cannot be held responsible for the actions of others or any kind of mishap with the EpiPen treatment.
231
@jerseygirl
So fear is a legitimate reason to exclude people? Any time you supervise any child you could make a mistake and be sued. Or you could be sued even if you do everything right if you get a disgruntled parent. No different if you have a child eith a disability. Anyone can sue for pretty much anything, doesn't mean they'll win or that children or adults with disabilities can be exlcuded out of fear for the small potential of a lawsuit.
All of these programs include a waiver that would apply just as much to a student with a disability as without. I also find is disgusting that the owner of this studio kicked another student out because they were defending the legal rights of their friend. That is not fear. It's ego, it's a power trip but not fear. No one can keep 100% allergy free space. Reactions happen even at home. What people are generally asked to do is not purposefully introduce the allergen. No peanut butter for snacks is pretty basic. Make sure there are some none peanut butter snacks or let the kid bring their own snack. Kids of that age and young read ingredient labels all the time when they have food allergies.
21
Yes, you could be sued. People can be sued over most anything. However, the courts do not expect you to be perfect. If you have behaved in a "reasonable and prudent manner" given the specific circumstances you will not be held liable. Please don't let fear of litigation drive your decisions and stiffile your compassion.
10
@jerseygirl The fear is understandable; I would also feel terrified. (Weird that people don't think that way about their cars.) Plus, as far as I know all the states have Good Samaritan laws; you would not be liable for trying. Of course, that is the least of it -- if a mistake I made was the reason someone died, I would feel awful, even making amends indirectly for the rest of my life. That said, people still need to try. In my parents' generation, it was polio. There is Aids. Now these new reactions. Something else will come along later. As a society, we need to all pitch in. And that doesn't mean individuals don't have to also take responsibility for the fate nature dealt them.
4
1. It takes 5 minutes ( or less) to learn how to administer an epi-pen. The easy 2 step directions are even on the pen in case you forget. Anyone can learn.
2. Any program leaving kids without adult supervision for hours at a time is unethical.
159
Once again, young people in this country demonstrate a better understanding of inclusion than the so-called adults.
The fact that they take a stand and try to even the playing field for one another shows true compassion and leadership.
The head of the theater school sounds like quite the diva, and probably shouldn't work with children, especially if she leaves them for a whole day without any supervision. That's more of a liability risk for her school than dealing with a food allergy.
134
Absurd behavior on the part of this theatre director. My child carries an Epi-pen for a life threatening peanut allergy. Most adults who care for and teach children are more than willing to learn how to use the medication and recognize the signs of an allergic reaction. many are now legally required to do so. Some of her friends and their parents have even learned to do the same. But some adults just refuse and do things like bring peanut products to events and activities that are supposed to be nut free. They are risking kids lives when they do that. There is really no reason a theatre production has to include peanuts.
57
@Andrew And what about all the children and adults who come to see the plays or do work in the theater? You also know a lot of products have nut oil in them? Including lotions and skin moisturizers? How do you protect the child against accidental exposure no matter what you do? They could have handled this but surely but the mother as far as I can tell was only leaving it up to the theater as you notice nowhere in the article does it mention her child carries his own epipen despite being fatally allergic to nuts. They both are at fault but I tend to lean towards her more because if my child had a fatal food allergy(esp to something as common as nuts) I would make sure my kid knew how to use a epipen and carried one with him constantly.
6
@Paul
the fact that you can never be 100% safe from accidental exposure is, in fact, why Epipens exist. these kids don't need to be in a bubble. a touch of common sense, a bit of compassion and some very simple knowledge is all that is really required.
6
@Paul This objection of yours has meanwhile been debunked.
3
It seems to me that this could have been resolved with some good old fashioned education, training, communication.
What was said when Mason's mother tried to enroll him initially that set off such alarm bells with the theater director?
My kids participate in a fairly intense local community theater group and I know for sure that there are kids with peanut allergies. My own kid is celiac (not life threatening, I realize). And, too, kids in theater are not always supervised with direct supervision (adults are in other parts of building).
A lawsuit? It seems like it was hitting a pin needle (tiny community drama program) with a sledge hammer.
16
Celiac can be life-threatening. Glad that your child has not experienced a reaction at that level.
2
@Kelly
Like so many Times articles lately, this one seems to be missing details.
What happened, exactly? The mom tried to enroll the kid, and the director said fine but said the mom had to be there? And the mom said 'no - you have to handle it'?
Having to handle it does seem reasonable to me (how hard is it to administer an epipen injection) but what did the mom go on to say? That there has to be an adult near him at all times?
The director (from the details given here) does seem to be a bit of a tyrant, but the story seems more intended to use this example to make a political point (people with food allergies are still excluded!) rather than to explore the details of the case. (It doesn't even do a very good job at making the larger point - the plural of "anecdote" is not "data." Did this occurrence happen because of widespread tendencies towards discrimination, or because this director is a bit of a tyrant?)
33
@Warbler Bravo! Well said.
1
this is definitely a sticky area. The intersection of the needs of the individual versus the needs of the greater society. A reasonable amount of accommodations are fair, but the reality is your kid with a special need or a 'disability' will likely not be able to participate in everything like everybody else and that is unfortunate, but needs to be accepted and made peace with. Life ain't fair. Making a federal case out and bringing about the shutting down of local programs is going to ostracize your child like nothing else could (regardless if the director is jerky). Plus if it is so deadly and you're being told 'we can't handle it' I would move on... come on parents you are the grown ups.
54
@SFtastic Really? Is avoiding peanuts so difficult that you can't accommodate a kid with an allergy? And making a "federal case" out of it is the right of someone who has been discriminated against under the ADA. The theater director was squarely in the wrong, don't blame the parents or the kids.
20
@Elizabeth S. - right. The legislators make determinations that basically say if you're not willing to run your open-to-the-public business to NOT EXCLUDE members of these protected classes, then just don't run that business. When someone wants to be allowed to exclude people in wheelchairs due to cost, we say well, if that's what you want to do, you can't offer that business to anyone. We don't do a calculation that the 3 people in wheelchairs must live with being excluded because 9,997 would not get the service otherwise. That's the essence of discrimination that, except for a few protected groups, the protected group tends to be a minority.
If laws only applied when we were 100% happy to comply anyway, laws would not be needed at all. If I am allowed to lawyer up in order to evade the law and exclude someone with such-and-such protected disability, why would I have the right to complain if someone else decides to lawyer up and evade the law to exclude me for being Jewish. You might deep down feel it's not the same, but if the legislators have decided to give both classes the right not to be excluded, then under the law, that makes their rights nor to be excluded the same.
8
@SFtastic: Is eating peanuts really a "need"?
1
I've worked in theater administration for a long time. There are huge egos involved and many staff members are former actors who never made it, but continue to thrive on drama. Suzanne Rubinstein sounds like such a person. I have had profound hearing loss since childhood and in my teens I had an acting teacher kick me out of drama class because he thought I wasn't paying attention to him, even though it was because I simply did not hear him. Ego, ego, ego. Ms. Rubinstein seems to have a huge one. Shame on her.
242
Good job to Mason and Sam. It takes guts to stand up for yourself and others.
250
@JEM I applaud them for standing up for themselves but you do realize the mother(as far as I can tell) is really risking her childs life? As Andrew said above in the comments his child has a fatal peanut allergy and makes his child know how to use a epipen and carries 1 but nowhere does this article mention her son carrying one. Also you have to watch out for more than just food for nut allergies. You'd be surprised where you can find nut oils. Shampoos, lotions, moisturizers, hand cream, makeup, soaps, etc. And the worst thing is: Unless they advertise it, you might not even know it has nut oil in it. Unlike food items they don't have to list everything.
8
@Paul
You are making baseless accusations. Even if the child carries an Epi pen and knows how to use it the adults also need to know this. Not every 10 year old is capable of using one. I know the child. He carries an epi pen, so maybe talk to the but stop accusing the mother.
31
@E.Ann. This man continues to blame the child and his mother despite being told by the author of this article that the child does carry an EpiPen. What he fails to understand is that when a child is in anaphylactic shock they are most likely unable to administer their own EpiPen. My son self carries and knows how to use it however, in the panic of an emergency who knows what will happen
27
From my own experience with theater in Junior High and high school, some of the most successful and enduring of these theater programs aimed at teens and preteens often rely on the total commitment and charisma of one or two adults.
This makes for an exciting and dynamic and creative environment - but those same adults may feel they have the right to run the show they way they want, and have a much bigger commitment to the success of their program than they do to the happy inclusion of all.
My experience predates peanut allergies - but I noticed that the leaders of the two theater groups I belonged to shared an allergy to interfering parents. So, if your Dad called to complain about slipping grades, or if Mom interrupted the final dress at 9pm wanting to take the 2nd lead home NOW, or if Mom insisted there be chaperones at the (very tame) after parties, or if Dad wanted to talk about what a small part their daughter got...those kids didn't have a future with those theater programs.
33
Good grief! And if the boy had a severe reaction and no one could give the epipen, these are the very parents who would sue the program.
We can lament the litigious society but it's a reality. I wonder if the parents would sign a waver accepting responsibility for their child's safety. Not likely.
77
@Leslie Accepting responsibility for their child's safety is the very essence of being a parent, both legally and morally. I assume responsibility for my child's safety, and I'm unaware of any waiver for that legal obligation beyond giving up custody of your child.
I'm a 36 year old adult with a deadly peanut allergy, and I could not possibly count the times I have heard people dismiss the allergy as "fake" or complain about the need to make a reasonable accommodation. For example, when I was a child a school nurse told me no one is allergic to peanuts and I was lying to get out of class when I was having a reaction. In another, I was flying South West and needed to request a peanut-free flight. The people sitting next to me proceeded to talk about how it was so stupid and annoying and likely not real anyway, and they were proving that point by eating a Snickers bar and nobody was dying. I turned to them and said that I was the person they were talking about (they were chagrined) and that peanut dust from 200 people filling the air of a plane cabin is different than one person eating peanuts glued together by caramel (at least for me). Oh, and I also had a headache because they were eating this 2 seats away from me.
I would pay an absolute fortune to remove food allergies from my life. They are limiting and extremely annoying, and it's particularly harmful when people don't believe they are real or refuse to make a very reasonable accommodation.
215
@giddified Well how reasonable can it be when as far as I can tell the mother doesn't have her fatally allergic child carry his own epipen for those just in case/better safe then sorry moments? Also what about all the products with nut oil in them? That can trigger a reaction as well and with people coming and going in a public theater all the time it's pretty much 100% impossible to make it a safe zone. Nut oils can be found in shampoos, lotions, moisturizers, hand cream, makeup, soaps, etc. And you know what the worse part is? Unlike food which is required to tell you what's in it, non-food products could have nut oils in them and you wouldn't know it unless they advertised it. I believe in food allergies and I think both sides could have handled this better. The best that could probably have happened was the theater have her sign a waiver holding them not responsible and having him carry his own epipen(just to be safe) and the theater making a good effort to keep nuts out as best they could and put up signs but that would have a limited effect to be honest but it would be better than nothing and let him participate.
3
@giddified Please. 200 people can't have peanuts because YOU are allergic to them? How about you do the math and reasonably accommodate a plane full of people who aren't allergic to nuts and are paying the same fare as you are to enjoy eating them?
15
I am a physician. Any average adult and most adolescents can be taught to administer an Epi Pen. If the child has the Epi Pen readily available and if there is a phone to dial 911, there is no reason to exclude anyone from anything. A no peanut accommodation can be managed in most social situations. I was once searched and stopped from bringing a bag of Peanut M&M's into the Northwestern University football stadium. If they can do it, anyone can do it. No one is requiring a nurse or paramedic on duty at all times in all places, just average common sense. Part of this is worry over liability lawsuits, as always.
309
@DocG I agree with you here. "Reasonable accommodation" is pretty vague, and what seems reasonable to Ms. Rubinstein may seem far too little to Mason's mom. I'd suggest both parties sign some kind of waiver that includes a list of the accommodations they agree to have, but I'm guessing Ms. Rubinstein would fear such a waiver would not stand up in court leaving her liable if something horrible happened.
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@DocG- unless of course you're on an airplane or other mode of public transportation. That's where the gap lies. a much bigger problem yet no one is addressing it. People with these types of allergies have been kicked off planes in the past and just recently the Times ran a story about it.
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“Just average common sense” is almost impossible to find
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It's actually quite easy to learn how to handle an epipen. There's plenty of information out there and "practice epipens" are available as well. Contact your local Health Department to arrange a training session. As someone who produced Youth Theatre for many years, I can tell you that we never hesitated to accommodate a child with a peanut allergy.
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As a parent of a child who is allergic to peanuts, I have had to have this conversation with those who run programs for children many times--even a sports coach who had been working with children for 30 years but really objected to my suggestion last year that the peanut butter and bagels on the bus might better be sunflower butter or hummus! My response is always to gently remark that if my child has a fatal reaction from exposure to peanuts during your activity, my child will not be the only one to suffer--the adults and other children will also be traumatized. That usually shifts the resistance, which I think is about not wanting to "cater" to one child over others. Perhaps there is ignorance about the severity of the allergy as well. It's an odd thing to encounter, clearly not rational, but this resistance exists for sure.
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@Busybody Tell your kid not to eat peanut butter. No one will be traumatized. Problem solved.
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@Busybody So you threatened the coach with litigation and abuse if your child got sick ? I 'll bet people get nervous when you come around...
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@Nadia You don't seem to understand how peanut allergies work. A person with a severe peanut allergy could go into anaphylaxis just by having the dust of peanuts in the air, or by touching someone or something that has a very small amount of peanut oil on it- too small to see or sense. So it's not enough for the allergic person to not eat peanuts.
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