Dear Secretary Pete: Let's Meet to Reimagine Equitable Infrastructure
- Jon Bari
- Oct 30, 2021
- 6 min read
Updated: Dec 24, 2025
Text of Jax's Letter to Transportation Secretary Pete Buttigieg, September 16, 2021
Dear Secretary Pete,
When I turned 8 in March, I wished for a cure for Celiac Disease and the 3 million Americans with Celiac. Eating without fear is our hope. Food insecurity happens everyday for Celiacs like me, especially when we travel. There is little to no safe Gluten Free food served on airplanes, at airports and at highway rest stops. That's like not having an ADA bathroom. Let's meet so I can help you reimagine equitable infrastructure. Thank you.
Sincerely,
Jax Bari
Background
Up until August 2018 when Jax was diagnosed with Celiac Disease (just before starting Kindergarten), we took our food freedom for granted. We enjoyed the spontaneity of food and could eat whatever and wherever we wanted, including when we traveled (i.e., fast food in the airport terminal).
As parents of a child with Celiac Disease, we have embraced its new normal. We are working to foster greater understanding and inclusion of those who suffer from Celiac Disease and food allergies in life's daily activities that involve food, especially at school and while traveling away from home. We have had numerous experiences with the food deserts on planes, at airports, at highway rest stops, etc.
Transportation Food Deserts: A Day in the Life
Jax wants to share a day in the life from a travel perspective so Secretary Pete can help those with Celiac Disease and food allergies.
Imagine leaving your hotel in Colorado at 5:30AM, traveling by car to Denver for more than 125 miles, arriving at Denver International Airport (DIA) and not finding any safe Gluten Free food options.
Then imagine having your flight delayed which caused you to miss your connecting flight in Dallas.
Then, upon arriving at Dallas Fort Worth International Airport (DFW), there is no safe Gluten Free food to be found throughout the terminals (plural). Keep in mind that all the while, your airline has not served safe Gluten Free food in flight, even when you tried to order it in advance, and even if you flew First Class.
15+ hours after leaving your hotel in Colorado, you arrive at Philadelphia International Airport (PHL), again to find no safe Gluten Free food options. Imagine someone not being able to use the restroom for 15+ hours since there was not an ADA accessible bathroom. That is not acceptable and it's inhumane.
For an entire day across three meals, three states and three time zones, you cannot feed your child anything except a protein bar and a bag of chips that you packed in advance or luckily found at the airport. You cannot even find chocolate milk that is labeled Gluten Free at any of the airport vendors or restaurants.
The rest of the family also cannot practically eat because how would that make your child feel watching his parents and sister have a meal, while there is no safe Gluten Free meal available for him.
Unfortunately, this is not an isolated experience, but the daily reality of travel for millions of Americans with celiac disease and food allergies. For Celiac patients and their families, travel is often defined by anxiety and food insecurity, regardless of age or socio-economic status. The constant threat of Gluten cross-contact, the prevalence of Gluten in approximately 80% of foods, the scarcity and high cost of Gluten Free options -- particularly while traveling -- and the lack of mandatory Gluten labeling on packaged foods and menus make safe eating an anxiety producing travel nightmare.
We hope that Secretary Pete will meet with Jax in Washington, D.C. or Philadelphia so Jax can personally share his lived experience to help Secretary Pete reimagine equitable infrastructure. Jax loves taking Amtrak, just like President Biden, so he would love to come to DC.
"When airports and highways are paid for with tax dollars, there should be reasonable food service accommodations made at those facilities for people with disabilities including Celiac Disease. Just like an ADA bathroom is a requirement at airports and rest stops, we must reimagine providing safe food service options to ensure that there are healthy food options for those with Celiac Disease and food allergies." -- Jon Bari
Pennsylvania Department of Transportation & Pennsylvania Turnpike Commission
When Jax was honored in September 2021 by the Pennsylvania State Senate in Harrisburg, Pennsylvania State Senator Amanda Cappelletti's office had reached out to Pennsylvania Department of Transportation (PENNDOT) Secretary Yassmin Gramian, PE to request a meeting for Jax to discuss equitable infrastructure, including the lack of accommodations of safe Gluten Free food available at rest stops along the Pennsylvania Turnpike. Secretary Gramian serves as a Commissioner of the Pennsylvania Turnpike.
In response to a meeting request by an 8-year old who is trying to navigate a Gluten filled world on a medically required Gluten Free diet, Secretary Gramian's office responded, "The [Pennsylvania Transportation] Department has no control over what Turnpike vendors provide but that your concerns would be shared with staff who work with those vendors for their consideration." The terse response suggested that it is from someone who has a food freedom (as we did prior to Jax getting diagnosed with Celiac), and one for which PENNDOT needs more education about Celiac Disease and food allergies and how these conditions are recognized disabilities under the ADA that can and should be reasonably accommodated. While I do claim to understand the details about contracting with Turnpike or airport food service vendors, it stands to reason that there are provisions in contracting that give PENNDOT some control and leverage over the actions of its food service vendors on a variety of operational issues (i.e., EEOC, compensation of employees, operating hours, compliance with Federal and State laws such as the ADA, etc.). For facilities that are built and maintained with State and Federal tax dollars, we need government authorities such as PENNDOT to be more accountable and proactive in providing equality to groups with special needs such as those with food allergies who should be able to fully use PENNDOT's rest stops in a comparable manner to those without food allergies.
Imagine if you will that PENNDOT said that it could not control whether there were ADA bathrooms at taxpayer funded rest stops along taxpayer funded turnpikes. That would be unimaginable and inhumane today.
However, unfortunately as recently as 1990, many highway rest stops and airports did not have wheelchair ramps, curb cuts or ADA compliant rest rooms since it was not until July 26, 1990 that President George H. W. Bush signed the Americans with Disabilities Act into law which required such accommodations.
As Dr. Martin Luther King said, “Human progress is neither automatic nor inevitable. Even a superficial look at history reveals that no social advance rolls in on the wheels inevitability. Every step towards the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.”
It's time to for the Federal government to reimagine equitable infrastructure again for those who travel and have food allergies, including Celiac Disease.
Post Script
Secretary Pete failed to help millions of kids like Jax and their families with potentially life-threatening food allergies.
On December 21, 2021, Secretary Pete wrote to Jax,
"I appreciate you raising the topic of gluten-free food served on airplanes, at airports, and at highway rest stops. I have shared your story and comments on current food options with members of my team who work with airlines, airports, and rest stops.
As you may know, the U.S. Department of Transportation is a vast agency--encompassing nearly 55 ,000 employees who are responsible for everything from transit and highways to pipeline safety and commercial space travel. I want you to know that my colleagues and I are working day in and day out to protect the safety of the American people, to rise to the climate challenge, to make sure transportation is an engine of opportunity for all, and to ensure our country's economic strength and global competitiveness for generations to come."
Secretary Pete refused to meet with Jax and the Celiac Journey Army of kids to hear their ideas. Secretary Pete also failed the Celiac and food allergy community since not one of the Secretary's 55,000 employees ever followed up with Jax.
Secretary Pete's apathy and failure was par for the course with the Biden Administration. Starting when he was 9-years-old in 2022, Jax Bari personally met with: President Biden; HHS Secretary Xavier Becerra; HHS Assistant Secretary of Health Rachel Levine, MD; FDA Commissioner Robert Califf, MD; FDA Deputy Commissioner of Human Foods Jim Jones; The Biden White House Domestic Policy Council & Office of Public Engagement; First Lady Jill Biden, Vice President Harris, Second Gentleman Emhoff, etc. From President Biden on down, they each FAILED to protect Celiacs! Watch the videos.
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