A letter to Governor Pritzker:
Independent living liberation is not optional, it’s survival! My good friend, mentor, and nationally recognized independent living advocate Larry Biondi wrote those principles one day during a trip we and some friends took on the train to Springfield to advocate for the rights of the disability community. Sadly, Larry passed away in 2021, but his legacy reminds us of an American ethic which is Life, Liberty and the Pursuit of Happiness.
Think about that for a moment. It’s not Death, Pity, and the Glorification of Eugenics. The value in that brief statement of autonomy is even more true today.
Another non-negotiable American principle, written in the preamble of our Constitution, is that we the people vow to promote the general welfare. This is especially true for the disability community, which according to the U.S. census, is approximately 80 million people strong.
One of the most disappointing aspects of the way that legislation is so commonly considered and crafted, is that when people with disabilities are directly impacted by it, politicians, for whatever reason, fail to go directly to their loyal constituents and listen to us, in order to form a complex understanding of the issues that we and our loved ones face every day. What more do we have to do to help the status quo finally get it? How do we help the status quo understand the uphill battles people with disabilities must endure to receive just a sliver of the respect, opportunity, self-determination and therefore a better likelihood of living on our own foundation, built by our own individual choices, which is ordinarily afforded to most others.
Sadly, once again, misinformation, smoke and mirrors, promised shortcuts, and outright manufactured lies and contrived panics have been spread by special interests who do not consider the quality of life of people with disabilities in Illinois to be a priority and make our communities into fully cultivating places of access for all, what Dr. Martin Luther King Jr. referred to as “The Beloved Community.”
You have a dangerously anti-American/alarmingly anti-freedom bill on your desk today, Governor J.B. Pritzker. SB 1950.
If you listen to us, we are certain that you will know why this wrecking ball of a bill could very easily be titled “Death is now Springfield’s go-to solution for all of us who the economy, the housing market, the health-care industry, the employment scene, the educational system, the financial industry, health and human services, the infrastructural landscape, the transportation spectrum, the retirement prospects, the legislatures, and the corporate sector have most failed in this bill.”
My dear mother, Linda Barton, studied at Rush Presbyterian St. Luke’s Nursing College and then worked almost her entire career as a nurse in Illinois, at Edward Hospital, Westlake Hospital, and Oak Park Hospital. She worked as much overtime hours as she could get in order to support my brother (a proud engineer who found his calling at the University of Illinois), and myself (a disability rights advocate who survived a traumatic brain injury at 4 months old), and she never complained about the long cold winters, or the exhausting hoops that a single mother has to go through to maintain her mental focus, as an independent female skillfully managing and overcoming the aggravating disability of multiple sclerosis, who countless others drew resolve from when she tirelessly cared for them in their times of greatest doubt and challenging anxiety, worrying about uncertain future days, when they might have otherwise decided that life’s just not worth the hassle anymore, and surrender to the myths peddled by the forces of coercion, control, bias, paternalism, and cruelty who wrote this bill, always lurking in the shadows, often when we are at our most vulnerable.
Her clients, patients and friends instead were, in those trying times, empowered by something that we call the will to live. We inherently know it. No matter who you are, or where you’re from. We are here to care for each other, to help one another get through the difficulties together, to be one.
SB 1950 promotes a lie as old as history, that when we are faced with a fork in the road to either adapt or perish, then the most reasonable thing we can do is take dinosaur ancient advice from those who know nothing about our struggles. We as members of the most fragile part of our collective social safety net are to follow special interest groups who are even less aware about our work to nurture a deeper understanding and build new opportunities to reinvent what it means to be a great engine of renewal for what is lacking in the will of powerful men, and as a result, delight in the “democracy” of the death cure.
Out of necessity, we demand our rightful place in society. And it isn’t a coffin. We the disability community are ready to make you proud, J.B. Goals that not too long ago were deemed impossible to exist on Earth for those who have as complex daily needs as us to be our best, now are not just dreamable. They are realistically attainable.
SB 1950 is a fraud masked as a remedy for those who never asked for a cure to our identity. This grim reaper is not a bill that you want your legacy to be affiliated with, Governor Pritzker.
We, as Illinoisans, tearfully remember that we have so many groundbreaking hearts and minds who left us before their greatest accomplishments were reached, souls who changed the state, the country, and the world to reach higher ground, pondering what a rare blessing it is to be here at the center of the greatest country on Earth, gazing at that fiery blue / orange / gold / pink / crimson / silvery sunset over endless acres of a country field in the summertime. The kind Linda and I watched out our backyard porch when I was just a little kid growing up listening to the brilliant music of John Prine and rooting for the Cubs to finally win the World Series.
You don’t want to be remembered as a public official who chose the easy answers to these issues of concern. That is not a bill that meets our standards for excellence. The truth is that SB 1950 is a reckless forfeit of imagination, a lack of spirit of the worst kind, a mirage of shockingly obvious oversimplifications, pretending to be a quick-fix solution for what we all are talking about: The need to finally start the era of long overdue universal health care, and mass expansion / prioritization / improvement / full-funding for long term services and supports for Illinoisans, who surely have earned the human right to live where we have the same quality of life as people do in any other place on the globe.
Labor knows that it will be a boom for small businesses and large industries. It’s an opportunity that rarely arrives in many generations, when a legislature can witness, in real time, the change that occurs when wisdom prevails, prompting you to utilize the true knowhow of everyday people instead of being lulled to sleep again by the lost lobbyists. The inclusion of the vision that is in our minds will create real long term jobs and act as a catalyst to unlock our strengths to bloom a fresh start when neighbors know all our neighbors again. Seniors. Veterans. People with disabilities. Retirees. Students. Workers. Immigrants. Families. Patriots. No longer torn apart by the sirens of division, hatred and ignorance. We’ve gotten enough of that noise in 2025 already!
Make this your proudest vote ever, J.B. We the people who oppose SB 1950 will be forever thankful if you do. And when you bravely veto this terribly ill-conceived train wreck of a “food sanitation bill,” we the people, all over the proud Land of Lincoln, will join together to remember the masses of united people who spoke up loud and clear for freedom.
We will have reminded each other what it really means when Larry wrote those essential words: It’s not optional, it’s survival! He was powerfully articulating the next chapter of our legacy as a people. To form a more perfect union. And a Better Day. A New Deal. A Liveable Life.
Veto SB 1950
Jonathan Barton is a community organizer for Progress Center for Independent Living in Forest Park, progresscil.org.