Hope Floats
The Christopher and Dana Reeve Paralysis Act will be five years old on September 25th. Unfortunately, no one is celebrating because it is five years still in the making and not five years providing vital programs enhancing treatments and cures. I know. My family lives the life.
When my son broke his neck in 2002, this bill was the lifeboat to which we attached ourselves in the roiled sea of a spinal injury. We reasoned that only a commitment on a national scale could make a difference in his lifetime.
The bill enjoyed near unanimous support in both Houses, with numerous co-sponsors from each side of the aisle. Yet it stalled in the doldrums of the 108th and 109th Republican controlled Congresses.
First introduced on Reeve’s 50th birthday in 2002, the CDRPA provides for collaboration in paralysis research, rehabilitation, and quality of life programs through the National Institutes of Health. This trio of fundamentals unites the disparate elements of care and cure for spinal cord injury in particular, and paralysis in general.
Reeve’s injury in 1995 and the final nine years of his life encapsulate an era of unprecedented hope for those with spinal injuries. In his search for remedies Reeve attracted both praise and scorn. For the thousands of families coping with paralysis, he was the literal equivalent of the figurative superhero he depicted on screen. Social conservatives, on the other hand, despised him for using his celebrity to tout the potential of stem cells.
Unbowed, Reeve pursued a multi-layered advocacy. His goal was to establish a structured funding platform to pursue research. Ultimately, he mobilized a political caucus resulting in the drafting of the CDRPA.
The bill had nothing, nada, zilch to do with the President’s policy on stem cells. Nonetheless, rightwing interest groups exerted their bias and pulled this legislation into the whirlpool of ideology. Reeve had dared to sail on the periphery of their prejudices and his legislation paid the price. Twice, in 2004 and 2006, Senators placed anonymous holds within committee, scuttling certain passage of the CDRPA.
As injuries go, Reeve’s was as bad as they come. Nonetheless the late actor had exhibited neurological return. Hope junkies, such as I, clung like barnacles to his besieged legislation even as the undertow of cultural conservatism dragged it far out to sea.
His dedication to a physical regimen spawned an entire industry of intensive rehabilitation. As he and other patients demonstrated plasticity in injured spinal cords, scientists imagined possibilities if the rigor of trials were combined with the restorative therapies of regenerative medicine. Suddenly, the four-letter word, cure, crept into the lexicon of neuroscience.
Reeve’s untimely death in 2004 dampened the enthusiasm. Hope diminished further, 1 1/2 years later, with the passing of his wife Dana. Today, the remnants of momentum for therapies stagger more sideways than forward. The Reeve’s foundation continues to be a guiding light. Its effectiveness, however, dims as the coarseness of politics under president Bush sanctions the abnegation of mercy, forgiveness, and compassion.
Certainly, Reeve changed the debate about recovery from spinal cord injury. His savvy gave a voice to disabled America. But the volume of that unifying voice softens with time. The paralyzed sub-culture of our society, which includes my family, seethes when reminded of the opportunities delayed by regressive reactions to the Reeve bill.
Still, it bobs along thanks to a crew of grassroots advocates who keep bailing the disappointment flooding the lower decks. The favorable winds of a new Democratic controlled Congress pushed the bill out of committee. It now waits in the queue for a vote by the full Senate later this fall. Then, barring any unforeseen consequences, it moves on to the House of Representatives.
If enacted, this legislation will not reverse paralysis. But it may well be the bridge between hope and deliverance. The passage of the CDRPA would also signal our country is ready to confront the moral absolutism stifling much of the legislative process. If so, that would be something worth celebrating.