Kendra Bozarth writes: Chronic illness has upended my work. It has also deepened my belief that the public programs we need shouldn’t be conditioned on “ability.” (Getty Images)
Since the summer of 2022, I’ve struggled with an “illness within an illness” known as post-exertional malaise, or PEM. The “post-exertional” part means that any activity or use of energy, minimal or not, can cause debilitating symptoms without warning that last from hours to weeks on end.
The physical effort of making myself lunch, or the emotional exertion of feeling anxious about the state of the world, often leaves me with intense malaise, including brain fog, body aches, light and sound sensitivity, migraines, eye pain and blurry vision, heart palpitations, lightheadedness, and more.
For reference, I used to run three miles most mornings. Now I can’t even walk three blocks most days.
As someone who reads and writes for a living, this chronic illness has upended my work. It has also deepened my political belief that the public programs we need (and can very much afford) as a state and country shouldn’t be conditional to one’s “ability.” As I was making ends meet by advocating for an economy that cares for all people in all bodies of all conditions, I was living through the very real consequences of a society that does not.
Health care costs eroded my savings, and the demands of everyday work — which I met while at times bed bound for months — made me sicker.
While recently touting their tax reform trap, Kansas House Speaker Dan Hawkins and Senate President Ty Masterson denounced Gov. Laura Kelly’s renewed call for Medicaid expansion as a key strategy for “making Kansas the best state in the country to live.” While promoting failed tax policy that would benefit the wealthiest Kansans, the two people with the most power in our Legislature referred to Medicaid expansion as a political stunt for “able-bodied adults” who “choose not to work.”
As someone who both understands equitable policy outcomes and has been forced to relinquish work to avoid permanent disability, I don’t believe that legislators with ableist beliefs should hold a “red line” for pricing the most vulnerable among us out of health care — and ultimately out of healthier living.
As someone who both understands equitable policy outcomes and has been forced to relinquish work to avoid permanent disability, I don’t believe that legislators with ableist beliefs should hold a 'red line' for pricing the most vulnerable among us out of health care — and ultimately out of healthier living.
– Kendra Bozarth
There shouldn’t be an admission charge of deservedness to obtain the most fundamental of needs, such as health care and housing. And the reality is that the complexities of what it means to have to “earn a living” often cost people their actual lives.
Approximately 100 Kansans ages 55 to 64 die every year as a result of our state’s failure to expand Medicaid, according to the Center on Budget and Policy Priorities. As researchers Matt Broaddus and Aviva Aron-Dine reported, nearly 11,000 lives were lost of the same-aged adults from 2014 to 2017 across all 10 of the remaining states that have yet to enact Medicaid expansion: Alabama, Florida, Georgia, Kansas, Mississippi, South Carolina, Tennessee, Texas, Wisconsin, and Wyoming.
Extending Medicaid coverage would expand health care coverage for not just our elders but also our children and the thousands of uninsured adults in between who all need — and deserve as a birthright — access to care. Though cost should not be a concern for ensuring that our neighbors and fellow residents can afford to stay alive in the richest country on earth, the federal government would pay the majority of the bill.
More than that, leading with a Disability Justice framework throughout Kansas politics and policymaking, especially when it comes to Medicaid expansion, would mean that none of us are left behind in the policy decisions that affect our livelihoods and lives. Among its core principles, Disability Justice argues that “all bodies are unique and essential” and that “all bodies have strengths and needs that must be met.”
During her 2023 State of the State speech in January, Kelly underscored the mission and vision of her administration: ensuring that “every Kansan can access the mental and physical healthcare they need to live happy, full lives.”
It’s easy to villainize people through surface-level, dehumanizing tropes as a means for cementing a status quo in service of the few. It’s much harder to uproot the rules, systems, and institutions that entrench inequality and, in their place, lay a new foundation of structures that guarantee well-being and prosperity for all of us.
Rather than prolong the debilitating consequences of regressive tax policy and underinvestment, let’s take care of each other — starting with Medicaid expansion.
Kendra Bozarth (she/her) is an editor, writer and organizer who specializes in economic policy and narrative change. Through its opinion section, Kansas Reflector works to amplify the voices of people who are affected by public policies or excluded from public debate. Find information, including how to submit your own commentary, here.
Our stories may be republished online or in print under Creative Commons license CC BY-NC-ND 4.0. We ask that you edit only for style or to shorten, provide proper attribution and link to our web site. Please see our republishing guidelines for use of photos and graphics.