Dear Group,
On Good Friday I attended the last of McMorris Rodgers’ hastily assembled “Conversations with Cathy.” She arrived with a considerable security detail leading her to the front of the fifty or so people assembled. Her opening remarks made reference to a proud accomplishment, the Steve Gleason Act. She detailed eye tracking devices enabling patients suffering from advanced ALS to communicate. I had heard the story from her before. Why is this story a feature of her every appearance?
Part of the answer to that question is this. Although McMorris Rodgers often lets the words “reach across the aisle” roll off her lips, the Gleason Act is one of only a handful of efforts on her part to actually reach…and, as you will see, even this effort carries a whiff of partisan messaging.
Steve Gleason is familiar to anyone who pays attention to football. He graduated from Gonzaga Prep and WSU; his parents still live in eastern Washington. He went on from local football fame to a career with the New Orleans Saints. There he turned the tide with an outstanding play one afternoon in 2006 just as New Orleans was staggering to its feet after Hurricane Katrina. Then tragedy struck him. Steve was diagnosed with amyotrophic lateral sclerosis (ALS), a horrific disease that finally leaves its victims with little or no voluntary movement except the ability to move their eyes. Steve at the time was only thirty-three, a man recently married and trying to start a family, a football hero with considerable resources. Instead of giving in to despair, he and his family used Steve’s fame, resources, and contacts to become tireless advocates for those suffering from ALS and other neuromuscular diseases.
When Medicare balked at paying for relatively new and expensive technology that allows patients to produce robotic speech by translating their eye movements, Mr. Gleason, his family, his non-profit, and the considerable network of followers pursued a legislative mandate for covering the technology. They enlisted Senator David Vitter (R-LA) and, through Steve’s family in eastern Washington, Cathy McMorris Rodgers to file bills in the Senate and the House. They lobbied. They organized a machine-voice calling campaign to Congresspeople called Robocalls from Humans. They invested themselves, time, and money in the effort petitioning Congress to act to grant money through Medicare to cover the technology.
With all that effort, the Steve Gleason Act passed both Senate and the House in 2015 (unanimously in the House–they did their homework) and was signed by President Obama. The original 2015 Act provided two year funding. In early February this year McMorris Rodgers was able to slip the Steve Gleason Enduring Voices Act as a rider into one of the last-minute, must-pass Continuing Resolutions and secure funding for the devices through Medicare in perpetuity. It is great story of persistence and bi-partisanship benefiting a group with a horrible disease.
A few years ago I would have ended this story here. After all, it’s a story of persistence. Society and government mustered up to do what’s right by a small group of people affected by hideous diseases. We’re all in this together, right?
Then I read this quote out of the Times Picayune:
“I believe our nation has the infrastructure and funds to provide technology for people who truly have no other voice,” Gleason said. “This is not an entitlement bill, it’s an empowerment bill, for people who want to be productive citizens.” [bold is mine]
What is he trying to say? Mr. Gleason is framing his eponymous bi-partisan law for a conservative audience, an audience for whom the meaning of entitlement is money you receive from the government but do not deserve. Apparently, Mr Gleason is sensitive to the idea that payments of money from Medicare to technology companies for eye-tracking devices for ALS patients might be looked upon as an entitlement. He is anxious to reframe his bill as: “empowerment…for people who want to be productive citizens.” Is there a subtext here suggesting that recipients of Medicare Disability or other government assistance are people who don’t want to be productive?
When the Affordable Care Act was phasing in, people who had lacked health insurance kept showing up in my office at the Spokane Eye Clinic with advanced diabetic eye disease, people with chronic diabetes who before the ACA had to choose between feeding their families and seeking care for their disease. I was able to help a good number of them. As a result many could see well enough to remain employed, feed their families…to “be productive citizens.” Mr. Gleason’s tremendous efforts aside, is the average patient with ALS likely to be more “productive” than a cared-for diabetic who is empowered to remain in the workforce? Mr. Gleason’s statement carries an implied judgement that should make us squirm.
The public face of my patients was not the face of a young sports icon with a family and a painfully visible wasting disease, a young sports icon prepared to frame the money spent on speech technology as empowerment. No, before the ACA my patients suffered quietly with their diabetes as it slowly robbed them of their sight and ability to work. Visual disability that degrades the ability to work is not easily depicted like the withering musculature and deteriorating voice of the young ALS patient, but what is more empowering than the restoration of sight?
Yet, in the same Good Friday “Conversation with Cathy” McMorris Rodgers apparently saw no irony in presenting the Repeal of the Individual Mandate of the Affordable Care Act as one of her proudest achievements. It is a theme she also sang in a Breitbart interview. How does she survive the cognitive dissonance of assuring the funding in perpetuity for ALS patients, while chipping away at the health insurance on which millions depend to remain productive, to remain empowered?
She seems able to focus on individual plight, like that of her son Cole or a Steve Gleason, while unable to grasp the plight of the larger citizenry. It is a failing she shares with her Party, and certainly with her President.
I want a Congresswoman with the ability to generalize, to see the bigger picture. It is time for a change.
Keep to the high ground,
Jerry