When Jax Bari Helped to Change the White House's National Strategy Language on Disabilities
This is a story about how 9 year old Jax Bari, a national advocate for Celiac Disease, informed the White House about avoiding euphemisms when referring to people with disabilities.
Jax is a Celiac changemaker. Based on his lived experience with a diet-related disease that impacts 3.3 million American Celiacs, Jax asked the White House to revise its language in its National Strategy from "people who are differently-abled" to "people with disabilities." The White House listened! Next up: declaring Gluten as a Major Food Allergen on all food products!
Since the historic White House Conference on Hunger, Nutrition, and Health ("White House Conference") was announced on May 4, 2022, Celiac Journey has been working to inform the Biden Administration of our public policy objective: reduce diet-related disease by requiring that be Gluten labeled as a Major Food Allergen on all packaged foods in the U.S.
Our policy objective is in alignment with the conclusions of the 2021 Expert Consultation from the Food and Agriculture Organization of the United Nations and World Health Organization (chaired by the FDA's Dr. Lauren Jackson) and how 85 other countries label Gluten as a Major Food Allergen to provide consumer protection for Celiacs.
On September 25, 2022, just three days before the White House Conference, we became aware of some dispiriting language on WhiteHouse.gov/HungerHealthConference in which the Biden Administration used euphemistic phrasing -- "people who are differently-abled" --when referring to people with disabilities.
Whoa! Already fed up with the ableism with the voluntary labeling scheme of Gluten in the 2004 Food Allergen Labeling and Consumer Protection Law ("FALCPA") and now with the language regarding the White House Conference, we wrote to the White House Chief of Staff to ask that the offending language be changed.
"The words of a president matter."-- President Joe Biden
Email to Ron Klain, White House Chief of Staff, and Nina Srivastava, Advisor to the White House Chief of Staff
My wife, Leslie, and I are so excited to attend the White House Conference. It would be great to connect with you in person to say hello. Please watch our 9 year old son Jax's video that he recorded for the WH Conf. I also want to share some feedback and suggestions on languaging disability for the WH Conf. that the disability community may find euphemistic.
Languaging Disability - Euphemisms Should Be Avoided
According to the WH Conference Web site, in the "Our Goal" section,
"Millions of Americans are afflicted with food insecurity and diet-related diseases — including heart disease, obesity, and type 2 diabetes -- which are some of the leading causes of death and disability in the U.S. The toll of hunger and these diseases is not distributed equally, disproportionately impacting underserved communities, including communities of color, people living in rural areas, people who are differently-abled, older adults, LGBTQI+ people, military families, and military veterans."
When talking about race, gender/gender identities, sexual orientations, family structures, religious beliefs, or socioeconomic status, any of these words/phrases work to speak about both people who are in the marginalized position and people who are in the privileged position.
As the parent of a child with Celiac Disease, a diet-related disease that qualifies as a disability under the ADA (Fourth Circuit Court of Appeals, No. 18-1725, Doherty v. Colonial Williamsburg, 5/31/19), I have become very attune to the language chosen to describe disabilities and abilities (often by those who are well-intentioned but non-disabled).
For example, referring to Jax and 3.3 million Celiacs as "differently-abled" is inaccurate and moreover euphemistic. Jax has Celiac Disease, a potentially life-threatening and life-debilitating food allergy and auto-immune disease triggered by eating Gluten, a protein found in Wheat, Barley, Rye and most Oats. When he consumes even a crumb of Gluten, he gets violently ill, and it damages his small intestine. Additionally, there is no rescue medicine available to treat Celiacs, even in the event of accidental ingestion, and one cannot outgrow Celiac. The only treatment is a strict Gluten Free diet for life. That is why we have been advocating to get Gluten labeled on all packaged foods in the US.
But when you have a physical, mental, developmental and/or other health condition (as is the case with Celiac), it means your body is interfering with a major life activity - eating in this case. For Jax and 3.3 million American Celiacs, this is not a different ability. It is not an ability at all. It is a disabling health condition.
As detailed in Celiac Journey's WH Conf. policy objective and in the context of Section 2(a) of President Biden's Executive Order 13985 "Advancing Racial Equity and Support for Underserved Communities Through the Federal Government," the Celiac community represents an underserved community which shares a particular characteristic including a chronic disability under the ADA and a potentially life-threatening and life-debilitating food allergy to eating Gluten with numerous adverse health consequences associated with the ingestion of Gluten.
The Celiac community has been systemically denied a full opportunity to participate in all aspects of economic, social and civil life (i.e., disproportionate low funding for medical research for Celiac, labeling Gluten only with a voluntary scheme, disqualifying Celiacs from service in the military, excluding Celiac Disease from the CDC's Index of Diseases & Conditions, etc.). See comments to the FDA from Bari Consulting Group, Celiac Journey and Gluten Free Finds, "Sharing Our Lived Experience with Celiac Disease - Comments on 'Evaluating the Public Health Importance of Food Allergens Other Than the Major Food Allergens Listed in the Federal Food, Drug, and Cosmetic Act: Guidance for FDA Staff and Stakeholders - Draft Guidance', August 16, 2022."
For someone with Celiac Disease, eating, sleeping, thinking, learning and working are major life activities that can be impacted on a daily basis, and there are various bodily systems which can be impacted, including: gastrointestinal (digestive) system, nervous system (anxiety, ataxia and neuropathy), skeletal system, reproductive system (infertility) and integumentary system. We recently published this article, White House Conference on Hunger, Nutrition & Health: Reduce Diet-Related Disease By Labeling Gluten.
Just like 13 year old Joshua Davis told the story for the needs of insulin (SOTU), my 9 year old son Jax tells the story about the needs of the Celiac community. Insulin is to Diabetics as Gluten Free food is to Celiacs.
I respectfully request that the WH Conf language of "people who are differently-abled" be changed to "people with disabilities". Food for thought. I am happy to speak with anyone on your staff about this further. Thank you for your consideration.
Jon, Leslie, Jax, and Lexi Bari, Celiac Journey
Note: this email was slightly edited and updated for this article
Words Matter - Jax's Advocacy Is Working
On September 27, 2022, just one day before the historic White House Conference, the Biden-Harris Administration's National Strategy on Hunger, Nutrition, and Health was released and the revised language on disabilities read as follows:
"The toll of hunger and diet-related diseases is not distributed equally; these challenges disproportionately impact communities of color, people living in rural areas, people living in territories, people with disabilities, older adults, LGBTQI+ people, military families, and Veterans." (emphasis added)
This was a really important change since we believe that our public policy objective of labeling Gluten as a Major Food Allergen aligns with President Biden's Executive Order 13985 "Advancing Racial Equity and Support for Underserved Communities Through the Federal Government." Celiacs represent an historically underserved community of persons with a disability in which their disability interferes with a major life activity - Eating. For example, Section 2(a) of Executive Order 13985 provides that,
“The term ‘equity’ means the consistent and systematic fair, just, and impartial treatment of all individuals, including individuals who belong to underserved communities that have been denied such treatment, such as Black, Latino, and Indigenous and Native American persons, Asian Americans and Pacific Islanders and other persons of color; members of religious minorities; lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons; persons with disabilities; persons who live in rural areas; and persons otherwise adversely affected by persistent poverty or inequality.” Further, section 2(b) provides that, “the term ‘underserved communities’ refers to populations sharing a particular characteristic, as well as geographic communities, that have been systematically denied a full opportunity to participate in aspects of economic, social, and civic life, as exemplified by the list in the preceding definition of equity.” (emphasis added)
Note: By October 1, 2022, the Web site for the White House Conference on Hunger, Nutrition, and Health was updated as well.
Learning from Civil Rights Pioneer Jennifer Keelan-Chaffins
When asked who his heroes are, Jax will say Jalen Hurts on the Philadelphia Eagles, but he'll also say it's people like Jennifer Keelan-Chaffins. At the age of 8, Jennifer crawled up the 83 steps of U.S. Capitol at the Capitol Crawl in March 1990 to shine a light for President George H.W. Bush and Congress that the Americans with Disabilities Act was needed to protect the civil rights of the disabled (which we are thankful for because Celiac is now a recognized disability).
Jennifer's book All the Way to the Top is so inspirational in telling her brave story. Jax has learned a lot about how Jennifer changed the world at age 8, and he has shown his empathy in understanding how important the passage of the ADA has been to millions of Americans with various types of disabilities that impact major life activities. Jax is grateful to Jennifer and her mom, Cynthia, for personally sharing their lived experience with us, supporting Jax's advocacy and encouraging Jax to use his voice in the movement for equality.
Connecting Disability Rights to Those People With Food Allergies Including Celiac Disease
Prior to October 6, 2019, I had never made the connection between Jax having Celiac Disease and having a disability. That all changed after watching a presentation from Mary Vargas, a civil rights attorney with Stein & Vargas, who recounted the May 31, 2019 appellate court victory of her client, J.D., in the matter of J.D. v. Colonial Williamsburg Foundation. Vargas shared what happened to J.D. on his school field trip to Colonial Williamsburg in May 2017 when he was not allowed a seat at the table at Shields Tavern to eat his safe Gluten Free food that he had brought from home, and he was excluded from the immersive educational experience with his classmates. By the time that Vargas had shared her client’s story from the agony of defeat to the thrill of victory, there was not a dry eye in the room.
Looking back 3.5 years, I can vividly recall my family sitting in the audience — Jax was on my lap (age 6 at that time), and Leslie and Lexi (Jax’s sister, age 14 at that time), were seated to our left. As I listened, I could not help but think that my son could have been J.D., and J.D.’s experience could have been Jax’s experience. I could not help but think that one day this could still be Jax’s experience. I had tears in my eyes, and my mind was racing…
How could my son have a disability? Vargas did an amazing job of explaining how there is a real resistance among parents of kids with Celiac Disease and food allergies in acknowledging that their child has a disability and disarming some preconceived ideas on a person’s limitations. Vargas explained the legal definition of disability to include:
Physical or mental impairment that substantially impairs one or more major life activities
Substantial impact to major bodily functions
After Vargas's presentation, I wanted to learn more about the ADA and its history. I then published the following article, Celebrating the 30th Anniversary of the Americans with Disabilities Act.
Requesting a Patient Advocacy Seat at the Table at the White House Conference
Starting in May 2022, Jon, Leslie, Lexi and Jax Bari provided their lived experience and research to inform the White House Conference including by having:
Participated in and provided spoken comments in the Breakout Room for Pillar 2 in the Listening Session, June 7, 2022;
Met with Dr. Sandi Ford, Special Assistant to the President for Health and Science, to inform the White House about the unmet needs of the Celiac community, especially the pediatric community, including with labeling Gluten and funding Celiac research, May 6, 2022;
Submitted written comments via email to the White House Conference, July 15, 2022;
Worked with various organizations, doctors, scientists as well as individuals with Celiac, their parents, caretakers and loved ones, to help generate 1,576 public comments submitted to the FDA on the labeling of Gluten, which represented 82.8% of the 1,903 total comments that the FDA received on Docket number: FDA-2021-N-0553; and
Submitted Bari Comments to the FDA's Draft Guidance, "Evaluating the Public Health Importance of Food Allergens Other Than the Major Food Allergens Listed in the Federal Food, Drug, and Cosmetic Act: Guidance for FDA Staff and Stakeholders, Draft Guidance," April 19, 2022, Docket Number: FDA-2021-N-0553, August 16, 2022.
Informed the White House on more accurate languaging to refer to people with disabilities.
It was an honor for my wife, Leslie, and me to have attended the White House Conference. As one of our key takeaways, we are grateful to have had the opportunity to share our lived experience about Celiac Disease, and advocate for the labeling of Gluten as a Major Food Allergen on all packed foods in the U.S., just like it is in 85 other countries.
What Happens Tomorrow Is Even More Important: Label Gluten as a Major Food Allergen Now
According to Rep. Jim McGovern who led a nationwide grassroots effort to bring the White House Conference to fruition, “And so, you know, what happens today [September 28, 2022] is important, but what happens tomorrow is even more important! And the follow up, and we all have to keep our commitments and our word here.”
Those are words to live by. While we are pleased that Jax helped get the languaging on people with disabilities right for the White House Conference and the Biden-Harris Administration's National Strategy on Hunger, Nutrition, and Health. That said, we now need to get the language right in FALCPA to stop the gaslighting of Gluten as a second class food allergen and Celiac as something other than a potentially life-threatening food allergy. In other words, we are calling on President Biden and Secretary Xavier Becerra to label Gluten now as a Major Food Allergen.
HHS Secretary Xavier Becerra Has Existing Statutory Authority to Label Gluten Now
According to the Food & Drug Law Journal's seminal article in 2006 that was published entitled, "When Food Is Poison: The History, Consequences, and Limitations of the Food Allergen Labeling and Consumer Protection Act of 2004" ("When Food Is Poison"), FALCPA "does not preclude FDA from expanding via regulation the list of major allergens requiring identification under the FALCPA's labeling scheme." Section 203(b) states that the labeling requirements established under new section 403(w) "do not prevent the Secretary from requiring labels or labeling changes for other food allergens that are not major food allergens." (emphasis added)
"When Food is Poison" was written by Laura Derr Sim, Esq. when she was a student at Harvard Law School, under the supervision of Lecturer on Law Peter Barton Hutt, Partner at Covington & Burling in Washington, D.C., for Harvard Law School's Winter 2005 Food and Drug Law course. Mr. Hutt was also former Chief Counsel to the FDA from 1971-1975. When Food is Poison won First Place in the 2005 H. Thomas Austern Memorial Writing Competition (long papers) sponsored by the Food and Drug Law Institute.
 When Food is Poison, Page 141, including footnotes 423-424: "See FALCPA 203(b), 21 U.S.C.A. 343(note); FALCPA 203(a), 21 U.S.C.A. 343(x). The Senate Committee Report states that it intends for any regulations issued by FDA requiring the identification of additional allergens to prescribe disclosure in 'a manner consistent with' the FALCPA. S. Rep. No. 108-226, at 10." "The legislation also adds a second misbranding provision to account for other food allergens. In particular, section 403(x) provides that FDA has the authority to require by regulation appropriate labeling of any spice, flavoring, coloring, or incidental additive ingredient that is, or includes as a constituent, a food allergen that is not a major food allergen. The committee does not intend the listing of all spices or flavorings in a product but intends that the Secretary will require the food allergen to be identified on the label in a manner consistent with this legislation."
 H.R. Rep. No. 108-608, at 18. (2004), https://www.congress.gov/108/crpt/hrpt608/CRPT-108hrpt608.pdf