After three years of advocating for spinal cord injury research I have come to recognize that there is a delicate balance between idealism and pragmatism. It’s a balance between the world as it is and the world as you believe it should be. This has been a profoundly difficult lesson at the capitol.
For the last two sessions there’s been a small bill that you may or may not have heard of moving through the legislature. The bill is currently referred to as the Spinal Cord Injury/Traumatic Brain (SCI/TBI) Injury Research Fund (Senate File 111). It’s a request for an allocation of $4 million annually to be distributed to research projects in Minnesota.
We have attempted to build a case for this investment by focusing on three things, all of which I believe any group of people afflicted with a disease or injury might make. Firstly, consider the effects of our injury as a humanitarian appeal. Secondly, consider it as investment in creating jobs that would directly benefit the economy while concurrently moving what we would consider necessary research towards mitigating the effects of our injuries. Thirdly, we have suggested that even incremental improvements in function for those living with paralysis would significantly reduce the costs of care (the estimates for SCI/TBI care approach $1 billion annually), which are predominantly the responsibility of the state.
But now, recent developments in a variety of research projects have brought this effort into a more immediate focus. Since this legislation was introduced in the last session, there have been several human clinical trials for the treatment of paralysis, which have shown varying degrees of improvement for the first patient cohorts. Those projects are now looking to expand the number of patients by collaborating with other institutions and Minnesota is on the list of potential sites. We believe that passing this legislation would help to entice those projects here. This would also mean that Minnesotans seeking entrance to these trials would have both a greater chance to participate as well as a keener awareness of the research developments in our backyard.
We know and have been told many times that our chances of passing this bill in this legislative session are very slim. This is where the delicate balance between idealism and pragmatism comes into focus. I have been told that most legislators “want to help” but . . . either we have not made a strong enough case, do not represent enough people, don’t have sufficient political influence or our cause does not directly and positively affect the ledger that our elected officials must manage. This is most directly informed by what is often referred to in our community as the “Care versus Cure” debate, of which I’m guessing most of you are aware.
We do not see a debate, but rather a continuum. Curative research and its eventual therapies are simply ticks along the continuum of providing more comprehensive care. I would suggest that legislators have been most sensitive to advocates who lean more on the pragmatic end of the continuum which has made our cause all the more difficult. While I see the need for more ramps, access and services I don’t believe it requires me to let go of the vision for a world in which their necessity is greatly diminished.
I believe we must live simultaneously in the world as it is and the world as it could or even should be. We will continue to advance our case that for those living with paralysis, the world as it could be will arrive sooner if we start living in it.
Matthew Rodreick is the father of Gabe Rodreick. Gabe broke his neck while diving in Costa Rica in 2008 and is a quadriplegic.