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Taking A Stand To Restore Paralysis Research in New York State


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There seems to be no greater punishment than paralysis.

It’s easy, lazy even, for me to say -- so many people struggle with horrific illnesses and severe physical challenges. It’s impossible to rank one over the next. But people with spinal cord injuries, and their families, experience a unique, constant anguish.

I found this to be true on July 4, 1998, the single worst day of my nearly 29-year life.

My brother Jeff, then 17, had always been the type to self soothe teenage hormonal episodes with sports — lacrosse, basketball, snow boarding, you name it.

It was with his typical confident skill that he effortlessly dove into the shallow end of a swimming pool. I don’t need to close my eyes to remember what it looked like -- a clean move, one he’d made so many times before.

One simple dive, and our world collapsed. Drowning. My parents’ screams as they jumped into the pool fully clothed. The shock of witnessing a grown boy lifeless and blue, cradled in my mom and dad’s arms.

In an exceedingly cruel twist of fate, athletic Jeff fractured his neck, injured the C1-C2 vertebrae in his spinal column, and at 17 became a high level quadriplegic.

To think about that day is to forget how to breathe, and each flash brings with it an almost unimaginable anguish.

Jeff has battled to adapt to his new life in the years since — navigating a wheelchair, operating a phrenic nerve pacemaker — and the daunting social isolation that comes from being dependent on 24/7 care.

As his sister, and not his primary caregiver, it is agonizing to see his spirits diminish and not know how to respond. As the years go by, his body and soul continues to atrophy. The boy that ran to the field as I would the stage is now imprisoned in his body, a shell of what could have been.

I spent the night of his accident an anxious, bewildered 14-year old, pacing the bedroom of a family friend, realizing there was a great chance Jeff would die, and nothing I could do would save him.

And yet, he survived. Nearly 15 years later, he is alive. And what remains is an extraordinarily intelligent, well spoken, man. A man with life I once thought was lost forever.

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To consider his medical situation “lucky” is to have a measure of grace I do not comprehend. And yet, his story is not over. There are scientists and medical researchers in my state, New York, devoted to the hope that one day Jeff will be reborn again. That there will be a cure for paralysis -- that perhaps a family, years from now, will have treatment options that have yet been discovered.

The New York Spinal Cord Injury Research Program has raised over $70 million for spinal cord research since 1998. This money was raised through moving violation penalties that were put aside into a state fund specifically geared toward spinal cord research grants. And yet, due to political maneuvering beyond my comprehension, New York Governor Andrew Cuomo followed former Governor David Paterson in rerouting these necessary research funds into the state’s general fund. The money is available, but the leadership needed to maintain this financial commitment to paralysis research is gone.

Cuomo’s office said there are no plans to restore this vital funding to spinal cord research. This is absolutely unacceptable, and insulting. As a result of his inaction, potential cures have stalled without the necessary funding needed for scientific growth. Governor Cuomo, this funding must be restored for the 2013-2014 budget.

We must take a stand for the 5.6 million Americans with a form of paralysis. We must take a stand for the researchers currently paralyzed in a pool of red tape.

Take a stand. So that Jeff, one day, can join me.

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Sarah Galli is the Founder & Executive Producer of Born for Broadway, whose mission is to engage college campuses in raising funds for paralysis related organizations through performance, with an annual Broadway gala showcasing the performances of both established Broadway performers as well as up and coming talent. She also co-chairs the Political Advocacy Network for WIN.NYC, dedicated to empowering young, pro choice, Democratic women. For more information, please visit www.bornforbroadway.com. Image of Jeff courtesy the author. Photo by Kenie Huber. Used by permission. 

Downtown, West Side to Lose Voting Power Under Council Redistricting Plan


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After many delays and revisions, the New York City Districting Commission has presented its final proposed new City Council district map to the City Council for approval. Every ten years, the City Council’s lines, like those of every legislative body in the country, must be changed to reflect changes in population as determined by the Census. As the Council has ultimate authority over land use decisions and landmark designations, its decennial redistricting is of course of great interest to us.

One might expect pretty substantial changes in the boundary lines of the 1st, 2nd, and 3rd Council districts. These districts encompass the Village, East Village, and NoHo, among many other downtown and West Side neighborhoods, and each of these districts grew faster than the city as a whole (in fact, the 1st had one of the largest population increases of any district in the city, while the 3rd , consisting of much of the Village, Chelsea, and Hell’s Kitchen, had the largest of all fifty-one districts).

But in spite of these dramatic population changes, the Commission proposes only very slight changes to the boundaries of the 1st, 2nd, and 3rd Council districts, unlike many others in the city. This means that residents of the Village, East Village and the other neighborhoods in these three districts would be among the most underrepresented in the City Council under the proposed new plan. In fact, residents of the 1st and 3rd Council districts, which include most of the Village, would actually be the most underrepresented in the City Council, and have the least voting power, of any residents in the entire city.

READ THE ENTIRE POST HERE

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Andrew Berman is the Executive Director of the Greenwich Village Society for Historic Preservation. 

Guest Commentary: Means, Ends and State Constitutional Reform


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Politicians weigh means against ends every day. It’s part of the job description. In a masterful film, Steven Speilberg showed us how Lincoln balanced means and ends as he sought the abolition of slavery. The message: bend the rules, but don’t break them: trading jobs for votes was O.K. to pass the 13th amendment; buying them for cash, not O.K. It worked. History was made.

We are not hearing too much these days about New York state government being dysfunctional. Fiscal discipline has been established. Gay marriage was passed. A new decentralized regional economic development paradigm was put in place and made to work. After years of wrangling, scandal and stasis, Gov. Andrew Cuomo has shown that New York State government can get things done.

He saw another opportunity to get things done in the tsunami of public demand for action in response to the tragic massacre of children at Newtown Connecticut. Though gun control was not on his announced agenda for the 2013 legislative session, he promised “the toughest assault weapon ban in the nation.” Cuomo wanted The New York SAFE Act passed fast — both because the iron was hot, and because of the danger that gun control would preempt his pre-laid plans for the session. And he wanted it passed first: before any other governor; before the president. To restore New York’s leadership, he said. To elevate his own political prospects, others opined.   

The governor lined up the votes, and issued a Message of Necessity. By this means the constitutional three day waiting period in the Legislature for acting on legislation was bypassed. No matter that Cuomo had previously been critical of the use of such messages in the absence of a true emergency, and in fact had refused to issue one while still passing a timely budget last year. The gun control bill passed. The end justified the means.

When things seem to be working, governmental structures and processes are a concern for a few professors, a few lawyers, an occasional elected official and a handful of others organized in so-called “good government’ (goo goo) groups. Legislators and lobbyists don’t usually embrace changes in ways of doing business that that they know intimately, and that have made them winners. Their mantra: “If it ain’t broke, don’t fix it.”

Cuomo came into office when things were widely believed to be broken. His key campaign policy document, The New New York Agenda, embraced a great range of structural reforms in state and local government. Thus far, results have been disappointing. Government reform goals – means – have been traded for fiscal and programmatic goals — ends.  The constitutional amendment on legislative redistricting, and now scheduled for a referendum vote in 2014, is a prime example. It does not give us a neutral process. The Legislature remains in control, with the Republicans in the Senate, teetering on the abyss, gaining an insurance policy against Democrats doing unto them in the future what they had always done to Democrats in the past. Hardly reform.

[Editor's Note: Read a letter from Citizens Union and the League of Women Voters on why the constitutional amendment on legislative redistricting was a victory for reform.]

The simple message: making government work is the enemy of reforming government, because it signals — falsely — that institutions and processes need no attention.

Another process change essential for democratizing our politics, campaign finance reform, will again be considered this year. Perhaps with Gov. Cuomo’s leadership, some progress will be made. Yet the agenda is packed, and the opportunities for tradeoffs abound. And even if the influence of big money in our politics can be mitigated through legislation, we still will have what Professor Peter Galie has begun to call our “Potemkin constitution,” full of provisions that have been emptied of meaning through practice or interpretation. We still have a Legislature too diminished in budgetary powers. We still have a judicial system that is in needed of serious structural reform. We still need to give the governor better tools for reorganizing the executive branch.   

The “means” of government, how things are structured and should work, is the special province of the state constitution. In the New NY Agenda, Cuomo called for a people’s constitutional convention to address the big “means” questions we face. Cuomo’s success in making our flawed system work does not diminish the urgent need to make that system better. The next time we have a real chance will be in 2017, when the constitution requires that the automatic constitutional convention vote be held.  

The opportunity to make the “means” of state government New York’s foremost concern presents Andrew Cuomo with a rare chance for truly transformative leadership: a Lincolnesque moment. Will he seize it?

 



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