The Court of Public Opinion

It goes without saying that we understand there are multiple sides to a given story that 140 characters or bold headlines can’t possibly encapsulate.  Hopefully we’re all discounting lead-ins and click-bait but even when you don’t read on or click through, exposure to information in brief can wedge into our minds and impact our perception.  Put another way, reading case law in a given area makes King Solomon’s child custody dilemma of old seem quaint.  Over at the Allergy Law Project, Laurel, Mary, and I have talked about speaking softly but also knowing your rights and standing firm while on this blog I’ve pontificated about issues with legalities in labeling and personal responsibility.

When I watch old movies with my mother she’ll cringe at inaccurate depictions of Germans (sorry mom, I still love Bedknobs and Broomsticks!) and I change the channel for most legal dramas (no one would really want to watch a show about what most attorneys do all day!). . .so watching the fallout from the recent #AAAAI LEAP study announcement has me empathizing with friends in scientific fields.  The furor has not left us “law talkers” (yes, a Simpson‘s reference) without reasons to want to chime in about issues like disclosure and liability.  And yet, I’ve refrained because I genuinely am out of my element except that the scientific method and peer review are things I esteem so I will keep reading about food allergy research even though I roll my eyes at proclamations about “cures.”  Still, when a friend forwards some article my way I feel appreciated because it got them thinking about food allergies or capacity or whatever is the topic at hand.

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Aside from feeling prone to parentheticals this beautiful spring-like Las Vegas morning, I did set out to talk a bit further about why it is important to take much of what you read with a grain of salt.  The “TL;DR” version is that there’s always more to the story.

For example, when a suit against PF Chang’s was recently filed regarding discriminatory pricing for gluten-free versus standard menu items, my knee jerk reaction was to think of how class actions tend to benefit attorneys most of all.  Trying to find the original complaint in the case was not simply a matter of using Google so once it was located the work of combing through the allegations began.  Even so, there has been discussion on the Allergy Law Project facebook page about the resulting piece covering the lawsuit about the risks of taking on a company that is actually trying to serve food allergic individuals safely.  Even I had trouble articulating why it is not okay to tell food allergic individuals to not eat somewhere if they don’t like a policy until I read Mary Vargas’ remark – “If the choice is whether to experience discrimination or not, that would seem a false choice [,] wouldn’t it?”

Debating whether or not there is something I could have done differently so that my daughter wouldn’t have food allergies is not going to get me anywhere, but railing against study approaches is equally unfruitful.  If suing a company with allegations of discrimination results in the ire of a community, what chilling effect is there on rights advocacy, or even in other fields, research, with that negativity?  I’m no Pollyanna, pessimism and worst case scenarios are the name of the game for me, but there’s a difference between being realistic and being in a constant state of attack.

Going back to Mary’s point, it is a false choice to say to a family they can keep their child home if they’re worried about safety (“just homeschool” is the refrain).  It was a false choice when I was in middle school and my parents had to leave me to be bullied by students and staff or keep me home in 7th and 8th grade.  The other remark seems to be that my child needs to “get used to” discrimination.  I’ll teach my child well enough about the cruelness of the world without someone turning basic social situations into minefields, thankyouverymuch.

I’ve written often about how lucky our family is to have the support of those that care about inclusion but sometimes it means biting your tongue.  Sometimes it means not fighting the small battle because of the larger one.  We’ve been refused service at a restaurant because of food allergies and walked away only to find a much better option to save the evening (thank you, random balloon twister at Macayo’s!). And sometimes it means calling a restaurant to task who is doing great most of the time but who makes a misstep in their approach.  Read a snippet of the argument in PF Chang’s response to the suit where they claim celiac disease isn’t a disability:

“Counsel for P.F. Chang’s has not found a single case where a court has held that celiac disease qualifies as a legal disability within the meaning of the Unruh Act, the DPA, or the ADA. There is no basis for this Court to blaze that trail here. Under any reasonable interpretation of these acts, a person cannot be considered “disabled” just because he or she cannot eat certain foods containing gluten.”

(Source: Motion to Dismiss, see page 6).  To add our grain of salt here, of course the attorneys for PF Chang’s are making the arguments they can.  I’m not faulting them for that.  But it does mean that there would be some that argue that suing them in the first place pushes them to make claim about disability.  I don’t know how the case will turn out, nothing is without nuance and there are a lot of procedural arguments in the motion that could carry the day depending on how the court views matters.  Another way to look at the corner PF Chang’s is in:  Just as the attorneys for the restaurant ignore the case by case analysis mandated by the Americans With Disability Act for disability determination by summarily stating there are no cases that hold celiac disease to be a disability – a case about a dollar surcharge may end up opening different doors than anticipated.

I had the privilege of doing some consults yesterday with seven very different individuals (thank you to my mother in law for watching the kids!) and though I know I’m a rambler by nature, fifteen minutes apiece as mandated by the Ask-A-Lawyer program was not remotely enough to get a real feel for each person’s case, let alone give them the advice I would like to.  Fifteen minutes isn’t enough, one news article isn’t enough either.  One headline.  One meme.  One piece of he-said-she-said.  It can be something that discourages us or something that emboldens us to seek deeper into issues that polarize us.  Get uncomfortable, try to see the other side(s).

I get calls from time to time, though I mainly practice elder law, from adults that have experienced anaphylaxis while eating out.  People of all ages and walks of life tell me they do not want to get anyone in trouble, that they don’t want to harm their ability to eat out in the future, that they don’t want everyone else to think they’re after money when what they really want is an apology.  A college student served a coffee drink containing milk, a man that begged staff at a hotel to call 9-1-1 while he fumbled for his epinephrine after being assured a dessert was nut free, a mom given real milk for her toddler instead of soy milk as requested. . .every one of them spoke to me of businesses that demanded to know what damages they wanted.  “I don’t want money,” one of them said, he just wanted to know his daughter won’t by left lying on the floor like he was.

So even if you read about a lawsuit about a death, or a surcharge, or what have you, consider that litigation is the arena our American system gives us to redress grievances, consider that many of the rights that are protected now are often the result of someone willing to weather the storm in the court of public opinion.  I want to leave you with the story of Jenny Hatch shared with me yesterday.  It moved me and I hope it moves you too:

Thanks for reading!

The Allergy Law Project

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I’m excited to share something that has been in the works since mid-2014 – the Allergy Law Project!  Countless e-mails and a number of telephone conference calls between Laurel Francoeur, Mary Vargas, and myself have brought us to the point where I can share the site with readers here.  Laurel had the idea to make a resource for folks navigating the intersection of law and allergy (celiac fits in with a lot of the framework too of course) in the United States.  Laurel is an author, attorney, and advocate and Mary is an attorney that focuses on disability rights.  We all understand one another’s schedules and are trying not to get too excited by the already positive reception the site is receiving in the community but it certainly feels like being in a study group back in law school.  Our ideas spark other ideas and before we know it we’re miles away from our initial topic of discussion.  Needless to say, I’m learning so much from them both of them as the least experienced of the trio.

Our first collaborative piece was born out of an idea I had to cover some basic terms – we’ll switch back and forth between “101” style topics and more detailed resources that may end up being useful to other attorneys like case histories and references.  The post is called “Terms of Art in Disability Law & Food Allergy” and while it may not contain new information for some, I know that there was a time when I had no idea what a 504 plan was.  There’s much more in the works, some of it in my inbox as I type this actually.

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Most of all, I feel incredibly privileged that my day job is something that can be one of service and even compassion.  Lawyers can have a bad reputation but law is both a sword and a shield – we can be frustrated with the system but understanding the way things are can give us tools to change them.

The resource is free (I was able to piggyback the hosting into a framework I already had and the $15 domain registration fee was really the only specific start up cost) because our time is donated which also keeps matters independent.  Below I’ve linked to the posts I’ve done here that touch on legal-type issues but you’ll see that our first post on the Project is not an advocacy piece as much as an informational one by comparison to what I post in this space.  With all of that comes the disclaimer that the Project isn’t about specifically advising anyone, it is about serving the idea of inclusion and safety.

CSPI Files Sesame Labeling Regulatory Petition

FTC Dot Com Disclosures and Food Allergy Blogging

When a School Tries to Split Up Epinephrine Auto-Injectors

Food Allergies and Travel in Recent News

Amtrak’s Unaccompanied Minor Policy Explicitly Excludes Food Allergic Youth (this post is what lead me to getting to know Mary!)

UPDATE: Suit Filed Against Amtrak re: Unaccompanied Minor Policy’s Exclusion of Food Allergic Youth

Amtrak Quietly Changes Their Unaccompanied Minor Policy

Ingredient Disclosures for Prescription Medications (or: A Worthy Cause)

A Brief in (Semi) Brief – Understanding the Amicus Brief of FARE and COPAA in T.F. vs. Fox Chapel Area School District

The Stories We Tell (or: Legalities in Labeling)

Stock Epinephrine in Schools in Nevada and Onward to Restaurants and More

“An Emerging Epidemic: Food Allergies in America” and NV SB 453

My Prepared Statement About Stock Epinephrine

As is probably apparent from my own forays, I’d love to do research on travel, labeling, and of course epinephrine access issues in addition to the obvious discrimination issues that come up.  We’ve even been discussing food allergy and prison populations behind the scenes so there’s no shortage of content.  In a way, these are things a lot of us research and take notes on, we’re just taking an extra step to make that effort into a service for others.  Thank you to Laurel for inviting me to be a part of this and letting me play webmaster/designer for the site to boot.  Which reminds me, I need to run accessibility tests on the site and get it prepared so that more people can access it (such as those that are blind).

I always say that most things I do bring me back to my webdesign roots and this is no exception.  I had fun tinkering with the logo idea as well and got invaluable feedback from my dear friend from all the way back when I was a student at Wasilla High School – Chris Swasey.  I also received early encouragement in this arena from Sharon Wong (who introduced me to Mary, actually!), Lisa Musician, Karen P., and Caroline Moassessi.

You can subscribe to the RSS feed for the site, follow on facebook or twitter, or if you comment here with topics you’d be keen on reading about I can certainly log those.  Comments on the site itself are closed.

Amtrak Quietly Changes Their Unaccompanied Minor Policy

Amtrak has quietly changed their Unaccompanied Minor Policy.  Before and after images are below, revealing that the food allergy related has been removed – the suit filed is ongoing.  A change in the policy as listed online does not change the discrimination that occurred and that was inherent when suit was filed.

To my knowledge, Amtrak still has made no statement about the case, about the policy, or about the change in policy.

August 3, 2014 versus November 3, 2014 (click to enlarge)
August 3, 2014 versus November 3, 2014 (click to enlarge)

Finally, the following note now appears immediately after the changed policy – the requirement of self administration may be an attempt to disclaim any responsibility for Amtrak’s conduct on its trains with regard to food allergic individuals:

Take Precautions for Allergies

Because Amtrak is unable to guarantee a peanut-free or allergen-free trip, we strongly encourage unaccompanied minor passengers to take all necessary medical precautions to prepare for the possibility of exposure. Parents/guardians must ensure that the unaccompanied minor travel with all necessary medications for food allergies (including epinephrine auto-injectors) and be capable of self-administering these medications.

Read more:

My initial post about the policy (8/3/14)

General post about food allergies and travel (8/20/14)

Press release about the suit against Amtrak (10/16/14)

Food Allergies and Travel in Recent News

 

Air Travel

A news story recently made the rounds about a young girl who experienced her first ever anaphylactic reaction, after previously having no allergies, on an airplane bound from Ireland to the United States. (Source: “Crew use Epi-Pen to save girl on plane” – Irish Independent, August 5, 2014)  People in the food allergy community were thrilled that (1) the girl was saved by quick action (remember: epinephrine is the priority in an allergic emergency, NOT antihistamines) and (2) perhaps the story would bring awareness and compassion from the general public regarding nuts and travel.

That was in early August and this morning I saw this article: “Family of nut allergy girl are removed from flight” – Irish Independent, August 20, 2014.  I’m going to sidestep the European press’ penchant for calling someone a “nut allergy girl” as I’ve mentioned before that I agreed with Marketing Mama that “girl with nut allergies” is more appropriate.

Here’s the basic timeline:

On or around August 5, 2014 – Diagnosis of food allergy via first anaphylactic reaction

On or around August 20, 2014 – Removal from flight home due to request that nuts not be served

From the article:

The family had been able to, it seems, make it to the United States for their holiday after the initial flight had been turned around owing to their daughter’s anaphylaxis and were trying to return home to Dublin this week:

 On the return flight back to Dublin after their holiday, the family again asked the airline not to serve nuts, the child’s mother explained.

“But that seemed to be a big issue because this was part of the United service and they said they didn’t advertise themselves as a ‘nut-free airline’,” she said.

“We were only going to discommode 10 other people because we were all in first class. They asked the other people but then a simple request seemed to turn into a big production. “

The couple and their child were then asked to get off the flight and were accommodated in a hotel for the night while the child’s aunt and grandparents travelled home.

The couple flew home the following morning after the airline agreed not to serve any nuts.

(Source)

The article indicates United doesn’t serve nuts but that they can’t make guarantees about the conduct of other passengers or make assurances about whether food served “may contain” nut products.  I know families living with food allergy will see what is wrong with this picture but I am seeing more and more the default response from the general public that would exclude the person with the allergy instead of the thing that puts them at risk.  Of course no one can guarantee anything, even families dealing with food allergies are the ones that make missteps sometimes, after all.

This latest story comes at the heels of one about a four year old girl that has a documented nut allergy and experienced anaphylaxis.  Purportedly a warning had been issued on a plane about not consuming nut products during the flight.  (Source)  I can’t find much to back up some of the hyperbolic reports about what happened – for example some have said that the passenger did not understand English fully and was not maliciously consuming nuts after being warned not to do so on RyanAir.  Stories seem to corroborate that anaphylaxis occurred and that the passenger eating the nuts was banned from the airline for two years.

I get the liability jargon people bandy about, I’m a lawyer.  In the same way “free speech” is misunderstood, we have to get some things straight about liability and discrimination and what it means when common carriers (entities that transport people) discriminate.  I’m also a “food allergy mom.”  While I am grateful that my child’s main defense (besides epinephrine, of course) is avoiding her allergens, I am saddened that a child that is barely a month into life as someone with food allergies would have to be subjected to discrimination.  When I wrote about Amtrak’s unaccompanied minor policy, many did say they could see why Amtrak wouldn’t want to deal with allergies, or that they don’t have the staff for an emergency.

Certainly a plane over the Atlantic is not the place to have a reaction, but the family in this story’s experiences match what I hear from people in my local food allergy parent group and online at large.  Sometimes they call ahead, sometimes they don’t, sometimes the note that indicates a pre-boarded passenger has a food allergy reaches one attendant and not the other, sometimes a family that scrambles to get the morning flight home because planes are more likely to be clean at that point finds a cashew on the floor in front of them… the list goes on.  And while we’re at it, how cool would it be to have stock epinephrine on airplanes and trains?  But I digress…

Our first and only air travel with our daughter was already planned when we got her allergy diagnosis and mere days after we met our first attempted allergist (finally found one that worked with us as a team years later on our third try).  We had her carseat on the plane and it was a quick trip to Monterrey, California to see my brother out at the Defense Language Institute.  I remember carrying her epinephrine and her epinephrine prescription to show security just in case there were issues but I didn’t know anything about how to handle other aspects of the trip.  We made it fine both ways but I know exactly how in a daze the family in the news story must feel.

Henry Ehrlich wrote a post recently about food in doctor’s office waiting rooms.  Granted, doctor’s office waits can be as long as an airplane trip, but it brings home that we are a society that is constantly eating.  I know there are medical conditions that require people to maintain their blood sugar and I’m not advocating going food free when people travel, but I wonder to myself how we need to frame this discussion.  What are we, as a community, asking for?  For every person that would love to see a general airline nut ban, there’s another within our own community that copes with a severe milk or other allergy that would like to be able to travel further than a car ride away.

My parenting style has evolved to the conclusion that we can’t adapt to situations if we don’t employ critical thinking instead of hard line rules.  “Never cross the street alone” doesn’t help a child in a situation where maybe crossing the street alone is the safest option.  Teaching them to watch out for cars, to understand what a car’s lights look like when it is backing up and to understand that the driver simply may not see them prepares them for situations we can’t anticipate.  The same goes for an airline defaulting to making no promises about the safety of passengers as they relate to allergens such as nuts.  How do we equip a gate agent, or other decision maker, with the tools that will make them feel empowered instead of fearful of a family traveling with food allergies?  Like many questions I am apt to ask, I don’t have an answer, but this is what I do know:

1) Allergies are on the rise and are here to stay.

2) People have a right to travel, go to school, and more even though they have life-threatening allergies.

There is a lot of violence as well as hardship in the world and I have lots of opinions about a lot of things, so please don’t view this discussion as diminishing the struggles of people at home and abroad against violence and prejudice.  Yes, in the grand scheme is it terrible that I can’t just buy a plane ticket on the cheapest airline and take my family on a trip but there are plenty of reasons people travel that aren’t for a holiday, that might be for an emergency, and if we think about these issues before those emergencies arise, we’ll be better prepared to be the most inclusive society we can be.