Editor's note: Finn Bullers, a champion of disability rights, unexpectedly died Sunday of complications related to pneumonia. He was 52. For many years, he was a reporter at The Kansas City Star, where he covered Johnson County government. Dan Margolies, editor of KCUR-based Heartland Health Monitor, has this remembrance.
I first got to know Finn more than 15 years ago when we were both reporters at The Kansas City Star. He was a heck of a reporter and writer. Of course, there were lots of good reporters and writers at The Star in those days. But none had to deal with the daily hardships that Finn did: He had a progressive neurological disease called Charcot Marie Tooth. It affected his coordination, and Finn needed crutches to get around.
Reporters tend to grouse a lot, but I never once heard Finn complain. He went about his business like the rest of us. That is, until he couldn’t. In 2009, his condition worsened to the point where he was forced give up his job.
But Finn was a battler. He gave up his job but he never gave up on life. The same passion that he brought to bear as a reporter he now brought to bear as an advocate for the disabled.
“I never led my life thinking there were limits or boundaries and that there were things I could not do,” he told KCUR’s Alex Smith in an October 2013 interview. “That propelled me into a fast-paced and hard-charging world of journalism where I kept moving at a pretty fast clip to meet that next deadline and get the story out.”
After Kansas privatized its Medicaid program and renamed it KanCare in 2013, Finn learned that the private insurance company that oversaw his care planned to reduce his round-the-clock care to 10 hours a day.
“It’s essentially like the state is saying, ‘You’ve got four apples that you need to have to survive and we’re willing to give you one apple,’” Finn told Smith.
The KanCare folks didn’t know it then, but they’d stirred up a hornet’s nest. Finn was in a wheelchair by then and breathing with the help of a ventilator, but he had an indomitable will and was relentless in fighting to get his benefits restored.
“People like to describe people in wheelchairs as being confined and I take quite the opposite view, that it’s actually a sign of liberation,” he said.
Finn raised such a ruckus that KanCare pretty much backed down. His benefits were restored.
Finn wasn’t just an advocate for himself. He was just as zealous an advocate for others. Among the causes he took up were Medicaid expansion, updating cities’ disability icons and ratification of the Convention on the Rights of People with Disabilities.
“He was a really great person, and someone who stood up to the powerful and spoke truth to power,” Rocky Nichols, executive director of the Disability Rights Center of Kansas, told me. “And in this day and age, that’s something that’s pretty rare.”
Finn was a bulldog when it came to issues affecting the disabled. After he lobbied the city of Merriam to adopt a more modern version of the wheelchair-accessible icon, Merriam in 2014 became the first Midwestern city to do just that.
Less than a year ago, Finn joined a long list of Kansans asking Kansas lawmakers to expand Medicaid. Making the trip from his Prairie Village home to Topeka to testify wasn’t easy for him. But he never would have considered not going.
More recently, he found himself battling once again with his KanCare managed care provider, which rejected his plan to live in a Prairie Village apartment, have a skilled nurse tend to him and lead a quality of life that he insisted was guaranteed him under the law.
In a characteristically defiant and eloquent email he sent to reporters in December, he wrote, “So I'm taking a stand, rejecting placement in a nursing home as is my right, and by doing so, hope my situation will shed light on a failed KanCare managed care plan that creates factory-line healthcare indifferent to the quality-of-life needs of the individual.”
When I saw him a few months ago, it was at a dinner function. I ran into him in the parking lot after the event had concluded. His caregiver was with him, as were his two young children, Alora and Christian.
He lit up when he saw me and launched into a conversation about KanCare, the Affordable Care Act and other health issues near and dear to his heart. I didn’t know it then, of course, but it would be the last time I’d see him.
He contracted pneumonia and that huge heart of his finally gave out on Sunday. R.I.P., my friend. We will miss your cussedness, your doggedness, your passion and, above all, your humanity.
Dan Margolies, editor of the Heartland Health Monitor team, is based at KCUR. You can reach him on Twitter @DanMargolies.