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Don C. Reed

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When Paralyzed Sarah Walked Again...

Posted: 08/14/2012 10:55 am

It was "only" a walking machine, pads and braces and electronic boots, made by Ekso Bionics of Richmond, Calif. But suspense grew as the technician strapped the gear on our friend in her wheelchair, and then stood behind her.

"Ready?" she asked.

At the nod, a button was pushed.

BEEEZHT -- in her bionic exo-skeleton, paralyzed Sarah Anderson stood up, and walked.

We were at a press conference for Assemblyman Bob Wieckowski's Assembly Bill 1657, the $1 increase to traffic tickets in California, to fund California's Roman Reed Spinal Cord Injury Research Act.

Roman spoke with his usual eloquence... But the battle was yet to come.

Six hours later, we sat in room 4203, the conference room for the Senate Appropriations committee.

There were seven senators on the committee. We needed a two-thirds majority. Mentally, I sighed and subtracted two before we even began.

Republicans.

In the past, Republicans did support paralysis cure research. In the first 10 years of our program's existence, the Roman Reed Spinal Cord Injury Research Act had to be renewed by both Assembly and Senate -- and only one Republican had ever voted against us. But now? It was as if they opposed every government program, no matter what.

The committee was chaired by Senator Chris Kehoe, a silver-haired progressive, and someone not to be trifled with in any way. When I entered the chamber I had smiled at her hopefully, but she did not return my greeting. Her face remained resolutely neutral.

I looked around for Senator Curren Price. I had met him once outside the Capitol building. The distinguished-looking man was wearing a football jacket at the time, and I did not know he was political. But when he asked me how my day was going, naturally I brought up our bill, and he said, "Come by my office" -- which, of course, I had, talking to his aides several times. But where was he now?

And where was Senator Darrel Steinberg, President Pro Tem of the Senate? He was a friend of medical research; but he was not there either.

This was the first day back after legislative break, and every senator had a bunch of committee meetings to attend, all at the same time, on different floors.

Our own Assemblyman, Bob Wieckowski, had about a dozen bills to keep track of today. He somehow managed to make each one important, always with a smile to share, but always ready to fight for the cause.

What a wonderful turnout in support!

Dr. Graham Creasey of Stanford University and the Veterans Administration;

Daniel Felizzatto of the Crime Victims' Action Alliance;

Dr. Stephen McKenna of Santa Clara Valley Medical Center;

Scientists Ann Tsukamoto and Nobuko Ichida from Stem Cells, Inc.;

Wheelchair warrior Karen Miner of Californians for Cure, my co-chair throughout our twelve year struggle;

Angela Gilliard of the University of California system;

Randy Hicks of Californians for Disability Rights (thanks to the relentless advocacy of Sue Barnon of that organization); and more.

Everyone used their precious seconds to defend the bill. Roman and I used our full three minutes, and maybe a little more, talking fast to squeeze all the arguments in.

Gloria Reed, beloved wife of 43 years, is not a natural public speaker. Off-stage she is a wonderful talker, engaging, cheery, articulate -- but put a microphone in her hand? She will hand it off to whoever is nearest.

But today she stepped up. Her hand was shaking on the mike: "I am Gloria Reed, Roman Reed's mom -- please help my son," she said.

Senator Kehoe said, "Thank you, Mrs. Reed -- and thank you for your brevity."

Opposition? There was none. Oh, good, I thought, maybe --

"Finance?" asked Senator Kehoe, turning to the numbers person. His comment was devastating, focusing solely on the high cost of traffic tickets.

All but unmentioned was the financial savings the bill offered -- the tremendous potential cost reductions to family, state and nation -- the slightest improvement in function could mean a huge reduction in costs.

When my son regained the use of his arms, thanks to heavy exercise and an experimental medicine (Sygen, then undergoing clinical trials), it saved him the cost of a driver-attendant, because he could handle an adapted van.

The senators asked questions; my stomach was in knots.

And then it was all up to Senator Kehoe. She could kill our bill, or give it life.

"We have heard opposition from finance, and we expected that opposition. But we have also heard the testimony." She looked at us. And then she did smile.

"I am prepared to support this bill," she said.

Into the room hurried a tall African-American gentleman, the man I had met outside the elevator. The Chairperson spoke:

"Senator Price, before us now is AB 1657, to add one dollar to traffic tickets, moneys to go to spinal cord injury--"

"1657? Move to approve!" he said.

The Republicans voted no. Three to two. We had a majority, but not the two-thirds majority we needed.

Everything depended now on two other senators, Elaine Kontominas Alquist and President Pro Tem Darrel Steinberg.

Outside we bumped into Senator Ted Lieu, a friend of former Assemblyman John Dutra (who began the bill) -- and Senator Lieu very kindly volunteered to go and ask Senator Alquist which way she intended to vote.

"She said a definite yes!" Senator Lieu seemed surprised when I hugged him.

Senator Darrel Steinberg also honored us with his "aye" vote.

At the end of the day, when all the votes were tabulated, our bill had passed, 5-2. What is before us now? The full vote of the Senate, maybe two weeks away.

If we survive that, next is the "concurrence" vote of the Assembly, to be sure they agree with the small amendments made by the Senate.

And then--

The Governor.

 

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