Many years ago I drove a yellow 1972 Monte Carlo, one in a long line of beaters or as they used to be called in my neighborhood, a hoop-dee. At one point I decided to write things on that hoop-dee. It had quotes from Woody Guthrie, Bob Dylan and a few quotes from friends who got a black Sharpie to doodle with when I picked them up. One quote has stayed with me. My friend Bart wrote “Cynicism is the refuge of a second-rate mind.”
I’ve been thinking about it since I got a call recently from Sen. Jeff Hayden (DFL-Minneapolis) to tell me that the Jablonski Rodreick Spinal Cord Injury-Traumatic Brain Injury Research Grant Bill didn’t make it into the budget. The bill contained a request for an annual $4 million allocation to support curative research.
I wasn’t thoroughly stunned, because the writing’s been on the wall since the Health and Human Services (HHS) budget numbers came out. But I was disappointed. In spite of my tendency toward cynicism, which I’ve always considered a natural response for anyone who’s paying attention, I was still holding out hope that we might squeeze it through.
I Twitter-bombed the film I made with then-Minnesota Viking Chris Kluwe (not truly a disability simulation but rather a shameless effort to use celebrity as a vehicle to draw attention to an intensely personal and publicly important issue) as a last-ditch effort to draw attention to our legislative effort. In spite of several thousand views of the film, it did not generate the traction I was hoping. So we will put our legislative effort to bed for a few months and let support from so many of you act as the antidote for my temptation to be cynical.
I brought this idea to Hayden, my senator, almost two years ago. He graciously listened to our story and consequently offered to author the bill. The idea was born out of my son Gabe’s July 2008 spinal cord injury. Gabe was injured while body surfing on a student exchange program in Costa Rica. In the almost five years since his injury science has made some very significant breakthroughs toward potential curative therapies. But the market is too small to expect an injection of capital.
Our hope was that we might convince legislators and citizens that this would be a fine example of the need for public investment. We made our case in every committee, and were mostly well received.
Our approach was threefold: 1. Tell the story of what it’s like to live with an injury. 2. Make the case for a return on investment due to the plus-$1 billion dollar expenditure for the ongoing annual healthcare costs of our community and 3. Educate legislators regarding the promise of what is now a rapidly moving field of research.
Legislators were almost unanimously receptive and supportive. During the Senate HHS Finance Committee debate, Sen. Mary Kiffmeyer (R-Big Lake) said “This is a bill whose time has come.” Not everyone agreed.
There was some vocal opposition from within our own disability community early on in the process, and quite possibly some discomfort with the message of some in the community who seek to ameliorate the effects of their injuries. This initially surprised me. But in my efforts to understand the dissenting voices, I grew to recognize that my son and family were beneficiaries of the services that these same voices had fought so hard to win. At the same time my hope is that they have heard the voices of our coalition who seek a more complete healing from their injuries, not unlike the treatment one would seek for a broken leg or a stroke.
At the end of the day, we could not compete with a shortfall that left many stunned and certain to feel shorted in the future. I listened to many make a final and for some a desperate appeal at the last House HHS Finance Committee in hopes that they wouldn’t be left out or wanting.
We are having a political dialogue in our communities and country that hinges on the choice between austerity and investment, notions of personal freedom and responsibility to our neighbors. I refuse to be accused of the cynicism that may be the symptom of a second-rate mind. This “Citizen Lobbying 101 Class” that I’ve taken has taught me many things, but most importantly that we all need to Get Up and Speak Up. While we all tend to pay attention to the big national political issues, it’s the local decisions that likely affect us the most. In our case speaking up is for those who cannot Get Up and Stand Up, without a lot of help.
We intend to be back the next session to do just that, and we hope that you would join us, at www.gusu4cure.org.
Matthew Rodrieck lives in Minneapolis.